Kate E. Reynolds Autism Agony Aunt

Ask Me - Kate E Reynolds answers your questions

Questions answered below: * What is Rett Syndrome? * What is a vocabulary box? * Encouraging speech * What is Pica? * Encouraging special interests or fascinations * Seeking family support * Managing Christmas * ASD and sibling embarrassment * ASD & loneliness and support for single mother * ASD & Halloween fears for a 4 year old * ASD & Intensive Interaction as therapy * ASD & Potty/toilet training for school * Support for newly diagnosed teen with Asperger Syndrome * ASD & Issues with a child repeating scenes from movies * ASD - 8 year old sleeping in parents' bed * Tantrums in a 3 year old with ASD * How to explain death and dying to child with ASD * Issues of picking/biting nails and skin in ASD * Building vocabulary skills for children with ASD * Community Mental Health Services (UK) & ASD * Self-restricted diet in a 4 year old with ASD

My granddaughter has been diagnosed with Rett Syndrome, which I’m told is autism, but seems different to any autism I’ve seen on TV.

CREATING A VOCABULARY BOX.

This is a special box in which the child keeps a set of vocabulary cards for the different words that they are learning. It is an idea that can be used at any stage, but as the child gets older they might want something more discrete, eg. a Personal Organiser that can fit into their bag.

Choose 5 words and help the child to make a new card for each word that they are going to learn. Depending on the time that you have available this might take more than one day.

Talk about what each word means and make sure that the child understands it. Clap the number of syllables and identify the first and last sounds. Talk about whether it is a long or short word.

If possible ask the child to draw a picture of the word on the front of the card. If they have motor difficulties you might offer them a selection of pictures so that they can choose one to cut out and stick on. It is important that they have some input into making the cards.

If the child is learning to use a colour coding system to help highlight the different uses of words (things, actions, descriptions etc.) ask them how they would like to show this information on the card, eg. put the correct colour dot in one corner.

Write the word on the back of the card and work with the child to build up a word web to show what the word means:

It can really help some children if you create very visual/tactile images.

If the child finds it useful then put the first sound and lines to represent the number of syllables under the picture on the front of the card.

Set aside time at least once a day to look at the words, play vocabulary games and practise making up sentences with them.

As the child’s vocabulary develops you can introduce a filing system for the box working from front to back:

1. New/difficult words
2. Words from last week
3. Words from 2 weeks ago
4. Words from 1 month ago
5. Words from 2 months ago
6. Words that I know. These words can gradually be removed and kept safe for revision at a later date.

The number of words/sections will depend on the child and how easy/difficult they find vocabulary work. When you have looked at the new/difficult words then check some of the words from further back in the box. You can slowly move the words back through the box as the child becomes familiar with them.

Remember that it is essential not to rush. If a child is having trouble learning words then think about the games and strategies that you are using and whether they are the most helpful for that child. Some children take a very long time to learn to use new words reliably and may well learn words and then forget them again. This means that it is important to review old words rather than assume that because a child used to be able to use them they will still be able to now. This system can help children to learn approximately 50 words a term.

My son has autism and his speech is severely limited, despite having speech and language therapy at school and privately at home. What can I do to promote his speech in the family?

There are several ways you can create a home environment that promotes your son’s speech. As your question says, it’s ‘in the family’ so it’s important that all the family and anyone else who cares closely for your son, is aware of and uses the following principles:

1. MEAL TIMES.
Eat together whenever possible and give each member of the family at the table an opportunity to speak without interruption. Enable your son to say something, using modelling techniques (see below). Your son also will learn about taking turns, which is a concept children with autism have to learn explicitly. This is a prerequisite for understanding about the needs and feelings of others and a building block for developing relationships in future.

2. WATCH YOUR TONGUE.
Speak clearly and use short sentences. Your son will be listening, even if sometimes he does not appear to be. Many autistic children find it easier to speak if you and they are concentrating on doing something else at the same time. For example, if you are both making something with play dough, you can use this as an opportunity to talk about what you are doing together and give your son the chance to comment or copy what you’ve said. It may be difficult for your son to engage in speech if you’re expecting him to make eye contact as he speaks; this can make some autistic children very uncomfortable and less likely to use words.

3. REPETITION.
The temptation when one has a child with speech delay may be to force him to repeat words until he ‘gets them right’ or correct his speech as he makes mistakes in his speech. These are not constructive ways of approaching developing your son’s speech. Instead you repeat his words so that he knows you understand his speech and say the correct words for him to hear but without expecting him to repeat them correctly immediately. Very young children who are not on the autism spectrum learn by listening to others talk and repeating, often making mistakes but generally mirroring speech until they perfect it. We don’t sit with two year old children and force them to repeat correct English.

4. MODELLING SPEECH.
This sounds easier than it is. As above, modelling is about giving your son words rather than correcting the ones he has tried to use. It’s about developing sentences he can repeat when he feels able. Mainly it’s about creating confidence in something in which your son has limited skills.

For example, ineffective modelling of language might be:
Your son: “ Dat dog is called Udo” (a phrase my son uses often)
You: “You mean ‘that’ dog and his name is Hugo, not Udo”

Your son hears the incorrect use of ‘dat’ and ‘Udo’ twice and only hears the correct words ‘that’ and ‘Hugo’ once. Remember to use repetitions in your speech to reinforce what your son is hearing (see below). He also doesn’t have the affirmation that he used the term ‘is called’ correctly because you’ve used a different way of saying it by use of ‘his name is’.

Another example of ineffective modelling might be:
Your son: “Dat dog is called Udo”
You: “No, he’s called?”

Here, your son doesn’t hear a speech model. Instead he may not recognise what he has said that is incorrect or how to correct it.

Constructive and effective speech modelling for this sentence would be:
You: “Yes, that dog is called Hugo. Hugo’s a nice name, isn’t it? That dog’s lucky to have such a nice name as Hugo.”

5. CREATING OPPORTUNITIES TO EXPAND SPEECH.
Try to ask open-ended questions of your son, rather than simply ‘yes’ and ‘no’ answers.
If your son says a noun, such as ‘house’ use this as a chance to expand his vocabulary by using a simple sentence such as “Yes, that house looks like Grandma’s.”
Give your child a simple running commentary on what you’re doing together. For example “We’re colouring the picture for Daddy” while you’re doing so.
Teach the concept of categorisation by naming things in particular categories, such as body parts when you’re bathing your son. This is a particularly important building block for teaching your son about sexuality in future.

6. RESPONSE TIME.
Give your son time to respond. His auditory and cognitive processing may be delayed so it will take him time to understand what you have said and pull together something with which to reply. So build in pauses for his responses.

7. DON’T GIVE UP.
It can be difficult to continue speech when there is little or no response or the replies you get don’t seem to ‘fit’ what you’ve said. Be persistent and consistent in your approach. Involve the whole family. Good luck!

My 7 year old severely autistic daughter eats anything. We were at the pub (bar) and she started shovelling cigarette butts in her mouth. The doctor has told us it’s PICA. Can it be stopped?

Pica affects anything up to 26% of severely autistic children with learning difficulties, according to the Challenging Behaviour Foundation (www.challengingbehaviour.org.uk) . Pica is defined as the eating of objects which are not edible and can range from stones to clothing and faeces. Consuming cigarette butts is a relatively common example of pica. Depending on the objects, this can be a dangerous behaviour that could cause perforations of the gastro-intestinal tract or choking. Even if the chosen object isn’t specifically going to cause a medical emergency, the behaviour can be distressing if practised in a public place – as you appear to have discovered when your daughter ate someone’s old cigarette butts.
Although research into pica is limited, triggers can be assessed by keeping a diary of when pica takes place. There are believed to be five main reasons for this behaviour:

1. Lack of zinc and iron or other minerals in the diet
A medical overview and bloods taken will assess this, so take your daughter to her consultant (via the family doctor in the UK). Supplements can be administered if diet is difficult to alter, according to dietetic advice. If you think about pregnant women, some indulge temporarily in pica. I certainly have known several women who’ve craved and eaten coal until treated with supplements after medical tests and advice.

The following four reasons are not believed to be consciously done. The child simply learns to gain what she needs at that time by particular behaviours, which are often unwittingly supported by our reactions as parents.

2. Social attention
This can be positive or negative, but a child may crave attention per se, regardless of its nature. So negative attention, resulting, for example, from eating faeces will still give the child what she wants and will reinforce the behaviour.

Ignoring the behaviour, giving minimal attention, no eye contact and using speech only to give instructions while you’re clearing up or removing the inedible objects is usually the most constructive approach. Then give her maximum attention when the behaviour is not being practised.

3. To obtain a favoured activity, object, food or drink
When a child is severely autistic she lacks the essential communication skills to effectively gain everything they need or want. Instead of communicating a need your daughter may behave in a particular way that has successfully satisfied her needs in the past. In effect, pica and other behaviours can become her way of communicating needs.
Try to make sure your daughter has to hand any of the things she most needs, such as drinks or favourite toys. Working on her communication skills will help. Use symbol cards if she is non-verbal or verbalises only a little. This way she can hold up a card depicting what she wants. Once she understands the routine that the card results in her gaining and satisfying her need, this should become her way of communicating instead of using pica.

4. To escape from an activity or situation
The diary is important to pinpoint what your daughter does prior to indulging in pica, especially if she is trying to avoid a particular activity or situation. Noting these behaviours or triggers will enable you to move her to a different situation or task before she turns to pica.
Again, improving her communication skills will help. Perhaps she can be enabled to hold up a ‘stop’ card or ‘no more’ when she’s had enough of what she’s doing.

5. Sensory feedback
Many of the items our children choose for pica give them sensory input that they crave. For example, abhorrent though it may seem, eating faeces involves a strong odour and texture which some children readily enjoy. Your daughter may like the pungent smell of cigarette butts and the strong flavour.
The trick is to find an alternative that is edible but allows your daughter a similar sensory experience. With faeces, parents often find that play dough with a high fragrance diverts their children from faeces. You may discover that strong mints may help or a hard-to-chew food, impregnated with a strong flavour, such as uncooked celery basted in flavoured sauce.
When dealing with a sensory issue, you can timetable the experience into your daughter’s day. This gives her permission to indulge in a structured way and reduces the likelihood of pica.
Sensory input may also be gained by giving your daughter something to chew on, such as chewing gum. This will give her the oral stimulation she craves without the distressing observation of her eating cigarette butts. It sounds like she hasn’t been eating cigarette butts regularly; were this the case, you would need to check she wasn’t addicted to nicotine, which would necessitate a program of withdrawal using patches, for example, and would need to be overseen by a medical practitioner.

As with many areas of autism, you may need to explicitly teach your daughter what is and isn’t edible. She may not know. Sometimes we assume our children have learned information that they haven’t, especially if they gain from eating something that isn’t edible.
As usual, focus on visual approaches to teaching. Perhaps show your daughter pictures of edible and non-edible items and work through with her which is which. The Challenging Behaviour Foundation (CBF) identifies a Pica Box in which you keep several chewable or edible items which are similar to those your daughter prefers. The CBF suggests allowing a child free access to the Pica Box initially then slowly reducing the access over time to control the overall behaviour.

General principles
1. Keep a diary of pica behaviours and possible triggers
2. Don’t ‘reward’ pica by your own behaviours
3. Concentrate on improving communication skills
4. Teach your daughter what is edible and not

Remember that diaries may seem onerous but they will be a good basis for changing this behaviour. You may not remove this behaviour completely, but you can significantly reduce it. Good luck.

Our daughter is completely obsessed with all things mermaid. Not just Little Mermaid but she has 10 in the bath and ‘can’t manage’ without every last one in there with her for her ‘stories’. She also seems to think she can actually become a mermaid after seeing the film ‘Aquamarine’. Last year it was ponies.

Obsessions or special interests are a fundamental part of autism spectrum disorders. Many autistic children have an extraordinary level of knowledge about their chosen subject (and note: they will choose, you can’t impose it.) If your child were non-verbal, it would be harder to understand because they can’t explain the significance or purpose of their current obsession. I say ‘current’ because, as you say, these interests change over time. Sometimes this can be incredibly frustrating, especially if you’ve accommodated one for Christmas or birthdays then discover it’s altered and your child has absolutely no interest in the previous obsession.
Many parents wonder if they should encourage their autistic children’s special interests, particularly if they seem all-consuming. These obsessions also can earmark a child as being very different in social settings and parents often feel the need to lessen their child’s difference, if for no other reason than reducing the child’s likelihood of being bullied or avoided.
The answer as to encourage or not is YES. Do feed into your daughter’s fascination with mermaids. In the process of enjoying her 10 mermaids in the bath or watching Aquamarine, she is continuously learning. She has ‘stories’ involving these characters, in which she probably acts out scenarios she’s seen either in person or on the screen, or she may even imagine these scenes. However she derives her story lines, she is exercising her imagination and expanding her vocabulary in a conversational way, even if this is through dolls. Each doll will have a character, so all of them are important personalities for each of her scenarios. She may act out things that are difficult for her to engage in, in reality, so this process gives her a platform to ‘converse’ and participate in the give and take in verbal exchanges between her characters. This verbalisation and turn-taking may be something she simply doesn’t or can’t do at school, for example. Rehearsing conversation is a useful way for her to learn without facing what can be brutal responses from peers if she doesn’t ‘get it right’ in actual conversation.
Movies can be another helpful tool for autistic children to learn about social rules and communication. It may be an idea for you to share the film-watching with her and talk about what’s happening on screen. Many autistic children find talking through challenging subjects, such as making conversation, boys or sexual issues, easier when there is another focus rather than facing you for a ‘chat’. Eye contact can be difficult of our children, some of whom describe feeling like someone else’s eyes are ‘cutting through’ them or otherwise making them feel uncomfortable or anxious. Concentrating on screen action can decrease this anxiety and gives you something to talk about. You may be surprised at your daughter’s interpretation of what’s happening. Sometimes, especially if there is more subtle language or social action on screen, you may discover your daughter really has little comprehension. She may repeatedly watch the film, or sections of it to gain insight into what’s happening or how the social world works from the safe environment of her own home.
Use her special interest to expand her reading by letting her choose books on the subject, or her writing and drawing abilities by providing the drawing paper and asking her to write what is one the drawing or give it a title. Though this process she will be improving her fine motor skills and hand-eye co-ordination, all motivated by her fascination with mermaids. You can even use them in mathematical problems, because she has such a high interest in the mermaid aspect. So add up mermaids, subtract them divide them; whatever level she’s at, those mermaids can help!
Another critically important aspect of supporting her special interest is that you are demonstrating your interest in her as a person. You’re building up her self-esteem, which can be undermined in our autistic children by virtue of their being and feeling different. You’re nurturing her well-being.
A final note: I have spent years accommodating my children’s fascinations and made the mistake many times of throwing away the last set of special interest items to make way for the next one. Don’t do it! Pack away the paraphernalia from one fascination and keep it in the loft. Our children often return to an old favourite special interest, sometimes when anxious with life. They enjoy the reassurance of an old ‘friend’. After all, these fascinations have many functions for autistic children, one of which is self-soothing.

Since our 3 year old son was diagnosed with autism 6 months ago, I feel like I’ve lost most of my friends and family. I feel constantly criticised for what I’m doing with him. Christmas has made it much more obvious – they’re keen to see our baby daughter but not our son.

This is a common theme in many families affected by autism. Much of the response of friends and extended families is due to fear. Autism affects our children in ways that makes them unpredictable to people who don’t know them – and often to us, as well. Emotional outbursts – commonly called ‘meltdowns’ – may be frequent and these are exhausting and unfathomable to many people. There may also be the embarrassment element, when our children behave publicly in what are perceived as naughty or deliberately disruptive ways. In our parents’ days, such behaviours might have been greeted with a sharp slap or being yelled at. Modern parenting doesn’t encourage any corporal punishment and, coupled with autism, we parents expect to gain a level of understanding of our children’s actions and work to enhance relationships with them. For many older people, this is simply folly, regardless of whether the child involved has autism or not.

To improve your situation, you need to enable your family to understand the issues more and feel that they have a part to play. There are also a few general things you can do to help your son. I would suggest the following:

• Join a local National Autistic Society group (see NAS website www.autism.org.uk). They often organise study days for parents to learn more about autism and how to manage behaviours. You would meet parents in a similar position to you, which can be a tremendous support. Some groups arrange regular meetings of parents. If you have access to the internet, the NAS is on facebook (fb), with local groups frequently having their own fb pages. This can be a way of gaining immediate support, by posting an issue/problem and asking for advice. These sites may give you greater perspective on your own situation – it can sometimes feel that we are alone in all the issues autism throws at us.

• The NAS site has plenty of sound advice and can be a good source of basic information about all aspects of autism you or your extended family.

• Communication is the key to enabling someone with autism. If you are advised to use a particular communication system, such as PECS*, with your son, ensure that someone from your extended family is involved in any demonstrations by the speech and language therapist, for example. If nothing is arranged, ask for help and get your parents or other family member to go with you. Not only will this help with their understanding and communication skills, your extended family may start to feel ‘special’ as they help your son. They will also get the opportunity to speak with experienced professional about autism and they may listen more, than hearing what you have to say – sorry if this sounds blunt, but it’s often true.

• If you’re using social stories (www.thegraycenter.org) or schedules to enable your son to visualise what’s going to happen or timetable events, let your parents/extended family see how your do this. It’s sometimes not enough just to explain that you draw pictures and write on the picture – people need to see the process, where the words are written, what sorts of things to say, how to phrase them, for instance.

• Involve your extended family and they will be more likely to invest emotionally in your son’s life. In this way, they will accept that they have two grandchildren by you, not just your baby daughter. For them to be truly involved in your son, they need information. You may feel the grief of an autism diagnosis for your son, but they will feel some impact of the diagnosis, too. They may simply feel at a loss as to how to help, so you may need to be direct in whatever you would like them to do to support you – and give them the tools to help.

• You don’t say if your son is receiving specialist preschool or nursery support. This would be via a referral from the health visitor, who I’m sure will be involved in such a young family as yours. If not, ask for one through the GP (family doctor). You may only get one or two sessions per week at any specialist unit, but this will give you a break from your son and you have a source of sound advice about autism and aspects of your son’s future.

• If you don’t have a social worker, then access one via the health visitor. Social workers who would be allocated to your son would be from the children disabilities team (rather than child protection, unless there are other issues I’m unaware of). These staff can help you access respite care to give you a regular break from your son’s exhausting behaviours. This is not likely to involved overnight respite stays but may be a few hours or a whole day on a regular basis. There are few funds around at present. As a single parent with two children, I have only ever received 4 hours PER MONTH respite to enable me to spend time with my daughter (I.e. not for me to have time alone). At times this definitely is in the ‘better than nothing’ category for me.

• If your daughter is only 6 months old, I wonder if you may have postnatal depression. It is worthwhile discussing this with your health visitor or family doctor. You will be drained from giving birth, from being constantly on call for a baby, from sleepless nights and raised hormone levels, so it’s worth checking that you don’t have a level of depression on top of all this.
Finally, I would reassure you that the most extreme of autistic behaviours do improve as your child matures, but your son may be 6+ before you realise this. Sometimes it’s hard to visualise things getting any better, especially if you feel alone and abandoned. Be kind to yourself and get support wherever you can.

I dread Christmas every year. Our autistic son’s a nightmare. His behaviour’s got progressively worse all week and we’ve still got a few days before it’s Christmas Day.

The last week at school before the holidays was probably full of unexpected changes and unstructured time, which will have upset your son. Autistic children thrive off the predictable and find surprises difficult. The Christmas vacation will be more of the same unless you act to instil some routine into your son’s days. The following ideas might help:
1. Draw a visual schedule of what your son will be doing each day, using pictures and words and number each drawing so your son knows the order of activities. Your son may not deal well with too many drawings at once, so give him 2-4 pictures at a time and cross them off as you go through the day.
2. Give your son a visual count-down to Christmas Day and tick off each day.
3. Some children are anxious about presents; surprises aren’t always welcome. One way around this is to draw and write on the outside of the gift what is inside the wrapping paper. This may sound unexciting, but many autistic children need this kind of prop to help them manage.
4. Keep as much of your son’s routine as possible. Events such as breakfast times, his usual foods and bedtime baths and stories should be kept the same.
5. Warn your son of visitors, particularly if he has rarely seen them or doesn’t know them at all. Also prepare him for the number of guests who are coming. It may be an idea to discourage impromptu visits which might upset your son due to anxiety and ruin everyone’s enjoyment of the day. Ask people to ring in advance.
6. Keep handy your son’s main comforters to distract him if he becomes anxious when you’re out of the house.
7. Always prepare your son for events you’re taking him to, such as seeing Father Christmas. Get as much information as you can to pass on to your son.
8. Christmas will be stressful for you, too, so it will be difficult for you to keep calm, especially if your son has emotional outbursts (meltdowns). Your son will pick up on your feelings; the more stressed you are, the more he will be.
9. Try and get someone to give you a break over the holidays so you’re more able to manage your son with patience and calm.
Some parents get tempted to threaten their autistic children with the chance that Santa won’t give them any presents. Firstly, I would be wary of feeding autistic children the details of the Father Christmas story, even if they have a little imagination in case you have to unpick all that information at a later date (see my current blog about Christmas.) Secondly, punishing children for their fears isn’t helpful. Try positive reinforcement of behaviours you want to encourage, such as shaking hands with visitors or even playing quietly in his bedroom while visitors come into your home.
You don’t say how old your son is, but you may find that as he matures he is more able to understand and handle Christmas and other seasonal events. Most autistic children develop socially and have a greater insight into the social world as they get older.
Sometimes the build-up to Christmas can be made worse if you don’t liaise with the school and work out how and what they are informing your son about changed routines. Some schools are extremely sensitive to the needs of autistic pupils, but it can depend on the experience of your son’s class teacher and the Special Educational Needs Co-ordinator (SENCO). Be proactive and work with them. Home-school communication books have a place in exchanging information ‘though I would say nothing beats talking directly with the class teacher. If your son has transport to school provided and you don’t meet him from school, then encourage telephone calls from the school to ensure no misunderstandings arise from the communication book especially at times which are likely to be stressful such as Christmas.
For more ideas, including possible presents, food issues at seasonal events and what to do with emotional outbursts, see my book:
Kate E. Reynolds (2012) ‘Party Planning for Children and Teens on the Autism Spectrum: how to avoid meltdowns and have fun!’ Jessica Kingsley Publishers, London.
http://www.jkp.com/search/index.php?s=kate+e+reynolds+party+planning

We have two sons. The older one is 15 years old and ok. My younger son has autism badly and is 11 now. He (the younger one) always makes embarrassing remarks when my other son brings home friends, which isn’t often. Now he’s hit puberty, I’m worried he’ll say or do even more inappropriate things.

It can be difficult to support siblings of autistic children, who reportedly often feel in the shadow of the autistic child, whose needs can be placed above those of the non-spectrum sibling for understandable reasons. Obviously this is a long-term situation and one which you’ve been dealing with for some years already. I would suggest you try the following:

1. Allocate time for each of your children with each of you as adults, so that each child gets time with each parent. Sometimes the autistic child is managed by mainly one parent for family reasons, but this can deprive the non-spectrum sibling of important input from either the mother or the father. It is equally important that your autistic son is shared between you as parents to prevent the main caregiver becoming exhausted or jaded and to enhance his personal development by experiencing the input of both mother and father.
2. If he can engage, work through some picture stories about feelings when people say hurtful things. These days, feelings tend to be examined in school, so he may have a good idea of how saying things can impact, but he may be unable to relate what he’s learned in school to what is actually happening at home. If you’re drawing the story, try copying and cutting out a picture of your son to place on the main character of the story. Work through the consequences of his words. It isn’t clear if he enjoys having his brother’s friends at home; if he does, you may suggest that they might not want to keep coming if he says things that upset them.
3. If your autistic son doesn’t like having these friends in your home, he could be acting out to prevent them invading his routine at home. If this is the case, you may need to timetable in the visits and be clear with your son when his brother’s friends will be at home, probably using visual cues or picture jigs.
4. Be specific about what you autistic son is saying that is inappropriate. Give him other things to say or talk about. Perhaps you can structure the time when these friends are at your home, so your autistic son has allocated time around them and, maybe, specific tasks to do with them eg a game. It would be a pity to lose a possible opportunity for him to socially develop with non-spectrum individuals, who can be effective role models.
5. Discuss the situation with your non-spectrum son. He may be at the point of not wanting to bring home his friends at all, if, as you suggest, his brother is embarrassing him so much. He may be willing to give his brother some allocated time with his friends, if this is carefully monitored by you or your husband.
6. If your non-spectrum child is deeply unhappy with his brother’s behaviour, you may need to have him invite friends to your home when your other son is out of the house. This may sound extreme, but your older son has a right to feel able to bring home friends without such interference from his brother.
7. Your comment about your son reaching puberty and having concerns about his behaviours isn’t clear. I wonder if you are concerned about his sexuality and possible inappropriate behaviours such as masturbation or touching his genital area in front of your other son’s friends. You or your husband can address this possibility by drawing stories about what he can and can’t do in public, meaning when other people are about. Autistic children are usually bound by rules and routines, so if you apply this rule soon and both endorse it, your son will follow what you say. Ensure all other main caregivers give the same message.**

If you can manage this difficult situation you will give your autistic son a helpful social experience with non-spectrum children while ensuring your older son is able to invite his friends back with confidence.
** This subject is covered extensively in my forthcoming Jessica Kingsley Publishers book about sexuality and severe autism.

My husband and I split up 8 months ago. It was amicable and he’s still involved with our son who’s 6 and has autistic spectrum disorder. I think my husband only stayed until our son was sorted out at school (he’s in a special unit in an ordinary school now.) Our son’s behaviour is awful; lots of kicking and spitting and he’s up a lot at night. His dad manages him well but I’m struggling. I’m feeling really low and alone even though the ex sees our son.

Lots of things are happening for you at the moment. Firstly, it’s not long since you separated from your husband, so you’re still grieving his loss, especially if you’re finding it hard to manage your son’s behaviours which you sound like you depended on his dad to help with before. The first year after any loss (including separation) is generally agreed to be the most difficult – it’s the ‘first’ everything without the other person. The first Christmas, first birthday, first wedding anniversary, for example, can feel particularly painful and lonely, even if you both agreed to the split and it was amicable. Perhaps you can reflect on this and give yourself the time to mourn and understand that’s what happening for you as well as any other issues to do with your son. Feeling down can be a stage in grieving, (as well as denial, anger and bargaining) which people need to work through before finally coming to a point where they can accept the loss. (See Elizabeth Kubler-Ross ‘On Death and Dying 1969)

Secondly, your son’s diagnosis and behaviours are challenging. If he’s up a lot at night, you’ll feel exhausted, which will not help your mood and could be bringing you down emotionally. Although I am not a great proponent of medication for autism, there is evidence that autistic children produce less melatonin which naturally regulates sleep. You might like to discuss with your son’s consultant if it is appropriate for your son to have oral melatonin to aid his sleep.

Many parents report poor sleep patterns in their autistic children in the early years before their children mature, often around 8 years of age when they start to sleep through the night. It is utterly exhausting, of course, to have years without adequate sleep. It’s like repeatedly living the first few weeks after your very first baby. Another way of tackling this may be to do exactly what health visitors advise with first babies – sleep whenever you can in the day. You don’t say if you do paid work or not, but if not you may get rest when your son’s at school.

It's worthwhile asking the school how they manage your son's behaviours, partly because this will support you and guide how best to help him and partly for his continuity of care and social support. Carol Gray's idea of social stories and comic strips giving consequences of behaviours can communicate more effectively with some children, depending on your son's level of understanding.

Practical support is very important, especially when you’re a single parent. You don’t say if your ex has your son regularly, say on fixed days. Sometimes a regular timetable of breaks can help, rather than ad hoc variable levels of rest from your son. Also try to build in a vacation/holiday for yourself.

Don’t be afraid to ask for help from friends and family. Remember that they sometimes don’t know what might be helpful to you or they might be scared of ‘making mistakes’ if they offer to help with your son. Lots of people are frigoursehtened of autism and feel unqualified to help. So be specific in what you want people to do and try to understand if they don’t quite get it right. Most parents of autistic children know a great deal about the condition, but friends and relatives won’t unless you guide and reassure them.

You’re in the UK, so you should have a social worker who specialises in children’s disability. These days social services organises all respite care so you can ask if you’d be entitled to a few hours per month. Services are subject to our current austerity measures but you should ask anyway.

If you can get practical support, try and build in some regular ‘me’ time. Whether you return to an activity or hobby you had before you had your son or try something new, some self-indulgence may well help your mental health.

It can particularly isolating if your child has transport provided by statutory agencies (often the case in the UK) because you don't get together with other parents in the playground even for a superficial chat. The National Autistic Society in the UK and similar state organisations in the US run social groups which can give you a way of socialising in an understanding and supportive set of people. There are also numerous pages on social networking sites, such as facebook, which can offer immediate support in the form of an online 'chat' with parents of autistic children.

If you’re feeling low, it may help to discuss this with your family doctor, who can refer you fro counselling or talking therapies which have proven value in low mood or depression. Sometimes a course of antidepressants may lift your mood while you’re going through particularly difficult times, with a view to coming off them once your life is more ordered.

Finally, try and eat a balanced diet and take some regular exercise, so long as it doesn’t exhaust you more. Start in small ways, perhaps with walking when you might drive somewhere. Exercise releases endorphins which are the body’s natural ‘feel good’ chemicals and can lift your mood, depending on how low you are and how regularly you exercise.
Best of luck.

I've been told to use intensive interaction with my little girl. She's two and has autism. What is it and does it work?

Intensive Interaction is a technique used for children and adults with severe communication difficulties (as in autism) profound learning difficulties or complex needs. It focuses on the early stages of communication when the person typically uses self-stimulatory behaviours, such as head banging or rocking, and isn't engaged in the social world.
The approach is very practical and something you can do at home without any specialist equipment or room. What might be helpful is for you to watch someone else work with your daughter or watch the type of work on Youtube. The idea is that you mimic your child's behaviours and allow her to take the lead in any sessions you do together. This may be an unusual experience for your daughter, like most severely autistic children.
Some people find this a difficult process for several reasons. Firstly, they find copying and acting out extreme autistic behaviours makes them self-conscious, regardless of whether or not they are being observed by others. Secondly, there may be long silences which many non-spectrum people find intolerable. Finally, you may question the value of mimicking behaviours which you may feel you simply want to eradicate.
It's worthwhile knowing that your copying your daughter's actions doesn't promote these behaviours – she won't do these more. If you feel there are awkward silences, remember that any 'pause' in communication will feel far longer to you than it is in reality. In addition, silence can be 'active' allowing you the chance to examine other features of communicating with your child, such as any body language she's showing or sounds she is making. Silence often gives autistic people the opportunity to process what's happening. In verbal interactions children with autism need much more time than non-spectrum kids to absorb what has been said and consider how to answer it, for example, so silence is a good thing to get used to for the future when your daughter is verbalising.
The whole session should be a sharing experience, perhaps one of the first you've had. The process of intensive interaction validates your child's being and is believed to be one method of building self-esteem in severely autistic children. The process of this type of work also gives you better insight into your child. I found it gave me an idea of why my son was so utterly absorbed in holding CDs in his hands, usually for hours; when I copied him, I realised it was only the ‘rainbow’ side of the CD he held towards his eyes and he rotated each CD so that the colours moved.
If you start to feel self-conscious, you’re not engaged in joining with your daughter. If you’re analysing, you’re not fully committing to following her lead and learning about her. It may be that you have distractions, perhaps chores that you need to do, or the telephone ringing. This is when it’s important to ensure you can work with your daughter without interruption, either actual (as in the phone ringing) or in your head (having other things to do). Make sure you complete any household duties before you practise intensive interaction with your child.
In addition, if you find yourself thinking about other things and being unable to follow our child, one technique to help you re-engage is to concentrate on breathing. Try and breathe with your child, in the way she is, to her rhythm and pace. This may even tell you something about how she is feeling, for example, short, fast breaths can indicate anxiety, while deeper, slower breathing may show she is relaxed.
Sometimes being self-conscious can be caused by a parent not really feeling that intensive interaction works as a therapy. It does. Read about it and see the positive results that are reported. My son was non-verbal, grunting until he was five and a half year of age. A practitioner friend used ‘joining’ with his behaviours and enabled him to say ‘A, a, a’ for an apple with 15 minutes of starting the work with him. When I did my first session with Jude, he stopped his stimming (self-stimulatory behaviours with CDs) and looked directly into my face as soon as I started mimicking him – this was the first time he’d stopped willingly and the first time he’d made active eye contact with me.
A way of helping you focus on how best to help your daughter might be to video your work with her. You can examine the session afterwards with or without another person's guidance and work out strategies that might help you in the next session. Videos also show you when progress is made, since this can be difficult to assess when you're so deeply involved in the therapy.
All the best.
Nind, M. & Hewett, D. (2005). (2nd Ed). Access to Communication: developing the basics of communication in people with severe learning difficulties through intensive interaction London: David Fulton.

I have a 14 year old son who's finally been diagnosed with Asperger's (I knew there was something wrong for a long time.) He's never really had friends and he's often on his own in the playground from what my friend's daughter says (my son won't talk about it.) What should the school be doing to help him? What can I do? I feel like I've let him down because he could've been diagnosed earlier and given help.

There are several points I'd make:

1. Asperger's Syndrome often is diagnosed much later than an autism disorder (also called childhood autism or classic autism) because the child usually reaches all developmental milestones, sometimes ahead of non-spectrum peers. In autism disorder there is speech delay and commonly is associated with obviously 'odd' and disruptive behaviours in boys – all of which demonstrate clearly that the child is different.
This isn't an excuse for late diagnosis though and doctors and health visitors should be more aware of all autism spectrum disorders (ASDs) Asperger's and autism disorder both come under the umbrella of ASDs. The important thing is that your son has a diagnosis now and you can help him.
2. Make sure the school is aware of his diagnosis and arrange to meet with his tutor and/or pupil support (or whatever the title is of staff who support special educational needs.) The school may run 'courses' for ASD children, such as the Australian program 'Friends for Life.' One of the most challenging times for ASD kids are unstructured times, such as breaks and lunchtimes. Many children with Asperger's syndrome (AS) don't understand the purpose of chatting and don't know what to say. As Simon Smith (who has AS) said at the Autism Show this year, “It's like a play where everyone else has a script but you.” The school could arrange quiet places for your son to go instead of hovering around the playground if he is uncomfortable with that (ask him – he may be OK with walking around by himself.)
The school may have a ‘buddying’ system where a friend is allocated to your son. This may sound patronising to us, but can be an enormous support in school where your son may (rightly) perceive that everyone else is buddied up with friends, aside from him.
For more information see: www.teachingexpertise.com/teaching-gifted-children-with-asperger-syndrome-practical-advice-2654
3. You can work with your son on his social skills – there are lots of ways. Although he won’t have had any verbal language delay, his comprehension and social ability to converse will be the areas affected by having Asperger’s. You don’t say whether or not you’re living with your son’s father. If so, he may help with this aspect of your son’s support. Try watching a film/movie together that, perhaps you’ve seen once already, and stop it at certain points to ask your son about his understanding of the language and gauge what he thinks is happening. You may be surprised at how far off the mark his understanding is! Then you can review what’s been said and help him understand what is meant by the spoken and body language he’s heard and seen. By breaking down movies or TV programs, you give him better knowledge of social situations in a safe environment.
4. Social networking can be helpful for some people with Asperger’s syndrome – but keep an eye on it! Posting on Facebook, for example, can give your son the opportunity to watch conversations and how they work, as well as posting his piece, having had time to think it through and possibly discuss it with you first. There isn’t the pressure that comes with face-to-face conversation, when he would be expected to be spontaneous. As he becomes more accomplished at learning what to say and understanding that conversations are a turn-taking exercise, your son will become more able to manage ‘proper’ talks, directly with other people.
The problem with social networking for someone like your son is that he may take what is said literally, he is open to being taken advantage of by non-spectrum peers and he may not realise the possible consequences of some of the things he says online. For example, inviting people to your house if you’re out/away and ending up with a house full of hangers-on and house-breakers!
5. There are lots of word play games that you can play with your son, which will give him a deeper understanding of language. Doing these consistently will be most beneficial, but try not to put him under pressure to learn or ‘get it right.’
For further information see: www.autism.org.uk
6. Ensure that the whole family is involved in helping to support your son. Make sure siblings don’t tease him, but help him and bring on board his father and any grandparents to ensure they understand your son needs explanations of language.
All the best!

My son is hooked on movies, but not the whole film - he repeats and repeats scenes then acts them out over and over. It's irritating and I can't find ways to make him stop.

Yes, I wouldn't try to stop him! This behaviour is part of what's called echolalia – the repetition of words and phrases, either immediately or some time afterwards. Some children will memorise very large chunks of movies and re-enact them. Historically, some academics thought this behaviour was meaningless and should be discouraged, but there is evidence now that echolalia is a good indicator that a child will start to speak or that their spoken language will develop more.
Movies provide a good source of spoken language as well as an opportunity for children to observe body language and human interaction. Repeatedly watching scenes actually enables autistic children to learn in a non-threatening, safe and predictable situation. It may seem odd if you're not on the spectrum, but try and think of it as a learning process.

Remember that toddlers acquire language by repetition of what they hear – we don't think it's odd because we see them gain language quickly and move through what we accept as developmental stages. We often do the repetition for toddlers, which can be irritating at the time but we see it as a temporary phase.

Perhaps we need developmental staging for parents/caregivers of autistic children to give more guidance – not to give a definitive pathway that all our children will take (they won't) but to adjust our expectations to something more realistic and show the purpose of what our children do in the process of acquiring language. Various programs do suggest levels of development but it would be useful to have more universal agreement, to offer parents/caregivers something more concrete. It is often the nebulous, undefined nature of our children's development and the path of autism that causes uncertainty and resulting stress among parents/caregivers.

My son still spends hours listening to videos from movies. More than that, he films scenes from our day-to-day lives which he replays, seemingly endlessly. Yet he repeats back everything he listens to in an appropriate context, albeit often with the same intonation as the original speaker,. Don't forget that toddlers imitate their parents exactly when they first speak, before progressing to higher linguistic skills.

Echolalia also has the purpose of “stimming” for some children – that is a self-stimulatory behaviour. Stimming is often seen in ASD children, who spin, jump or arm-flap and it soothes them by giving what's called sensory input. Many ASD children will continue to use stimming into adulthood as a means of managing unpredictable situations, although higher functioning people will be able to contain this behaviour in public.
A note of caution: If the movie is inappropriate for the maturity of the ASD child this may cause problems – our children tend to be literal and have honed rote learning skills (learning by heart) so will absorb swearing or any poor behaviours readily. This can be a danger also because our children may have high computer skills, which allow the to navigate the web and observe sites that are to old/mature for them.

For more information see:

http://autism.about.com/od/childrenandautism/f/echolalia.htm

My son is 8 years old and he's still sleeping in our bed. It's more like musical beds at night. I don't mind so much but hubby's not happy.

This is a common, common problem. I saw a similar case a couple of weeks ago on an autism site and the responses showed this was something many parents experience.
The first thing to remember is that this behaviour is now a set routine, so your son will resist its change furiously – our autistic children have an almost pathological fear of change.

Whatever you decide to do, you need to stick to plan, so that your child adjusts to the new routine – chopping and changing will produce still more resistance and anger.
Something to think about is why you’ve let this happen for so long. Often it’s because we are so exhausted with our ASD kids behaviours all day and frequently a lot at night. We are too tired to tackle yet another issue, especially at the end of the day.

Another reason is that we can feel guilty about our child having autism in the first place. We can feel a sense of self-blame that we have produced a disabled child. This can be reflected in our behaviours and latitude we give our ASD kids. We can “give in” to the demands of our children, including allowing them to encroach on personal space of bedrooms.

Single parents, possibly, are more susceptible to this because they usually have spare room in their bed. Once staying in your bed becomes established behaviour, your child will follow this pattern without “growing out” of it, unlike many non-spectrum children. Sometimes parents attempt to re-establish whose bed is whose by returning the child to their own bed once they are asleep. Of course, your ASD child will then become heavier over time until you are unable to carry them back to their own bed.

The greatest problem with allowing these sleeping patterns is that your child will grow up, unaware of the boundaries between themselves and other humans. They may be unable to distinguish between sleeping with you and sharing a bed with other adults – which leaves your child vulnerable in future. It’s always wise to address sleeping arrangements early in the child’s life, drawing up boundaries which will not only help immediately but into the child’s adult life when you’re hoping they will be able to manage more independently.

It’s easy to forget that our dependent children will grow up. Whether we like to face it or not, they’ll develop physically, even if they cannot function well socially.

Try enhancing the child’s own bedroom environment – use his fascinations to make his room the place he wants to be.

Try social stories that show him the entire bedtime routine - bath, teeth, then sleeping in his own room and you and your husband in your own, separate room.

If your son persists in coming into your room after settling in his bed, your husband could carry him back – something that many single mothers simply don’t have the strength to do as their child gets older.

I am not a great advocate of using medication on children, but it may be worth discussing your son’s consultant the possibility of having melatonin. This is naturally produced in non-spectrum people and helps the body differentiate night and day time. In those with ASDs, there are often low levels of melatonin, so the medical team may prescribe oral melatonin, which may induce better sleep patterns in your son – but you’d still have to tackle the issue of where he is expecting to sleep.
One thing I would not advise, but I see suggested on websites, is to lock your child into his room. This would be counter-productive in my opinion – and could be positively dangerous if there’s a house fire (heaven forbid) or if he gets angry, knocking down furniture and harming himself.
For parents/caregivers of young autistic children, please instil at a young age the routine of them sleeping in their own beds. It is hard to stop the cycle of sleeping with mummy and daddy (more commonly just mummy) when the child is older and more entrenched in a set sleeping pattern.
Your health visitor may have more ideas, so ask!
Good luck – and be persistent!

My 3 year old son has been diagnosed with autism by the consultant. He isn’t talking and often gets frustrated and has really bad tantrums. What can I do to help him? 28 May 2012

You don't say what type of autism your son has, but it sounds like he has autism disorder, sometimes called classic or childhood autism (see my "articles" section for a definition of autism spectrum disorders.) If his speech is affected, your son will become frustrated at not being able to communicate his needs/what he wants. Lack of speech also means he can't explain when things are frightening him. Many autistic children have sensory difficulties, so, for example, lights, loud noises, different textures to touch or taste, smells can all distress a child with autism, leading to what you describe as tantrums.
I usually refer to these as uncontrollable emotional outbursts and one of the most likely times they will occur is during transitions. This is when your child is moving from one situation or activity to another.

The earlier the diagnosis, the sooner strategies to help communication improve can be put in place. You don't say if the consultant referred your son to a speech and language therapist - this is essential, although you may find that a specialist centre/schools may be advised by speech and language therapists, but the one-to-one work is done by teachers, nursery or other staff.

There are several commonly used methods of helping communication with autistic children, most of which are based on the fact that most autistic people are highly visual in their understanding of the world - they understand by seeing.
Firstly, PECS or Picture Exchange Communication System, which involves using pictures of objects (initially) then actions and more complex things. The child is taught to prompt an adult for a desired thing by handing over a picture of the object that the child wants, in exchange for that object. In the early stages, this can be tricky, so two trained staff will teach your son the principles of PECS and you will usually observe then be taught.

I remember being very sceptical about PECS and whether it actually would encourage speech. The name of the object is always on the picture and when your son gives you the picture of what he wants, you are expected to say what the object is to embed it in your child's memory. This kind of repetition would take place naturally in an non-spectrum child - think of toddlers who repeat words endlessly. You have to do the repetition for your child.

One of the challenges of delayed speech is that we are used to feedback in conversation. When we have a child who, not only doesn't verbally respond, but quite often may appear disinterested, we tend to be quieter - when, in fact, our children need us to continue being verbal to reinforce talking in their social world. But make sure you give your son a space to make a sound back, or absorb some of what you say - don't give him a barrage of endless talking.

Makaton sign language sometimes is used. It involves speaking words at the same time as signing them. My son's specialist pre-school discouraged use of Makaton with autistic children - it was my niece who was working with older children on the autism spectrum, who told me to try anything that might improve communication. In the event, I learned to sign and my son learned that he could use his arms - he started to gesture when making sounds, instead of hanging his arms stiffly at his sides. I used Makaton in combination with PECS. The advantage of pictures, of course, is that anyone can help the child - it prevents dependence on those who have signing skills.

I was taught by a speech and language therapist to hold objects by my mouth as I said what they were, because my son had no understanding that different things had separate names. I also spent a lot of time in front of mirrors with my son - this helped me see how little I moved my mouth when talking and enabled my son to copy my mouth movements.

What are called visual timetables are used frequently in schools and show in pictures what is going to happen and when. Autistic children (and adults) like predictability - they find the unknown or unexpected are frightening or deeply unsettling.

As your son's ability to communicate develop, you can start to use so-called social stories (these are often referred to on autism social networks.) These are a strip of drawn pictures (you'll get used to drawing to explain things) which show a new situation or event that is going to happen and that your child may not have experienced before. Social stories can prepare autistic children or can help after an event/situation to explain things. For example, you might draw a series of pictures that show what will happen when your child goes into school one morning, if it will be different to other mornings.

Most challenging behaviours are caused by difficulties in communication, or by the child being scared of what is happening - which will be lessened when communication becomes easier.

For further information see:

How do I explain death to my autistic 6 year old? Her Grandma died suddenly this week.

Explaining death and dying to an autistic child is one of the most difficult things to do – just at the time when you’re grieving the loss of someone who was significant in your life. It’s especially difficult because this was a sudden death. You need to reassure your daughter that it won’t happen to her.

In general, I would advise to discuss the possibility of death while someone is ill, by explaining to your child how the body sometimes stops working so well. This means the person needs medicines, which may not always cure the illness, so finally the person’s body stops working altogether – this is dying or the person is dead. It’s also a good idea to talk about being sad and crying – and that this shows how much Grandma meant to everyone and it’s part of saying goodbye. It’s ok.

Another useful way of preparing for death is to have a ritual when your pets die. For example, we placed our dead hamsters and fish in a box on a cushion, said our goodbyes and buried them deep in the back garden with a special stone or object to mark the spot.

Children with Autism spectrum Disorders (ASDs) need clear explanations, which may seem sterile or almost uncaring to ordinary people, but they help the child process what is happening in a way they understand.

Be careful which words you use. Phrases such as “popping your clogs” – meaning dying – are not clear to children with ASDs who don’t grasp the true meaning but will literally think clogs are shoes and popping is something you can do to them! Particularly avoid phrases such as “going to sleep and not waking up again” – or your child could become terrified of going to bed! Explanations using animals can seem easier but you must make the link to humans – if you don’t, your child might believe death only happens to animals and be shocked when it happens to someone they love. Describing death as part of the life cycle can be a clear and practical way.

Be wary of making up stories which you might think will lessen the blow of death. People talk of people who’ve died as being stars in the night sky, for example – but how do you explain to a distraught child the night when clouds cover the stars? For autistic children the concept of people looking down on them is real and may actually frighten them if they feel they’re being watched all the time. There is also the point that as they grow older, ASD children will realise your explanations were stories and feel deceived and angry.

People with ASDs find change challenging – many have a pathological fear of it – and death is an irreversible change where someone is leaving and never coming back. If you can prepare them - do!
 
Use social stories or pictures to describe what happened or what is going to happen. Culturally, we often find it difficult to talk about death, let alone draw it – but this will give your daughter a clearer idea. You are probably used to drawing and writing simply sentences underneath – if not, this is the time to start. Your daughter can take away the pictures and process what is happening. If you're religious and there may be rituals she hasn't experience before, so explain these changes to routine too.

Remember that grieving can feel very physical and this may be frightening for your daughter. Explain that this is expected but that eventually she will feel better and things will go on without Grandma but you’ll never forget her. You know how best how to communicate with your child, so you’ll pitch what you say to her level.

Your daughter may feel uncertain and scared about death happening to someone else suddenly – try to keep her routine as much as possible and tell school about the death. It can be disconcerting for a child – even frightening for an autistic child – to see you crying or showing emotion. Although your child may not appear to notice, she will and her reaction to this and to grief and loss may be challenging behaviours, if not at home, then in another environment.

Some people report that their children on the spectrum display challenging or obsessive behaviours related to a death some months after the death itself – so be aware that, when you may be adjusting to the loss, it may still be very “live” for your daughter. The first year after a death is the most difficult, when those left behind have to experience the first of each annual event - the first birthday, the first Christmas etc without the person who died.

Also keep her involved in arrangements. These days children are encouraged to attend funerals and it gives them an opportunity to say goodbye and has been shown to help children adjust to loss. You don’t say how socially developed she is, but if she can help choose a hymn or song that Grandma liked, or help in some other way, she will be enabled to move through the process of grieving.

It can be difficult as an adult to support a needy child when you are grieving yourself and it may be tempting to protect your little girl (and yourself) by preventing her from attending the funeral service – this may store problems for later. You may find it helpful to ask one particular relative to care for your daughter throughout the service.

If your daughter is better able to understand concepts using tangible objects, you may think about taking your child to see her grandmother - but prepare her for the difference in her Grandma's appearance. This clearly is a personal issue and highly dependent on your knowledge of your daughter. It may be that a photograph of her grandmother laying in rest may enable her to realise that her grandma is no longer living. Maybe your daughter would want a lock of her hair for a locket, for example, that would give her a keepsake or you could create a book or box of memories together (photos and other memorabilia.)

You may find these useful to read with your daughter:
Recommended by Royal College of Psychiatrists www.rcpsych.ac.uk/publications/booksbeyondwords/bbw/1904671047.aspx1

For further information about explaining/managing illness and death, visit the National Autistic Society website http://www.autism.org.uk/living-with-autism/at-home/death-bereavement-and-autism-spectrum-disorders.aspx
or ring the NAS helpline on 0808 800 4104 (1000- 1600 Mon-Fri)

I have a 10 year old son (ADHD and ASD) and he picks and picks at his finger and toe nails til they bleed. So far I’ve tried painting repellent stuff on his nails and whatever threats, stopping treats, whatever I can think of. His language is good enough for him to understand what I’m saying and meaning.

This is common in autism spectrum disorders (ASDs). Picking at nail cuticles and biting nails of fingers and toes often forms part of obsessive compulsive behaviours associated with ASDs. In medical terms it is called ONYCHOPHAGIA.

Almost a third of non-spectrum children of ages 7-10 years are believed to bite/pick at their nails and this is regarded at a temporary behaviour which they will stop over time and certainly by adult-hood. The incidence increases with puberty, when extremes of hormones, peer pressure and other factors put young people under pressure, so biting or picking nails is a method of reducing stress.

In ASDs, as with your son, the behaviour goes beyond what is considered ‘ordinary’ habit and continues when there is clear damage to the skin and nails, when neither has time to heal and injuries can become infected.
Probably the key to addressing this problem is to recognise that it is a deep-seated obsessive behaviour and it is this that needs attention, not the superficial wounds (aside from treating infections). Trying to deter your son from this behaviour by any form of threats or sanctions is missing the point, in my opinion. It is often due to frustration about an inability to communicate properly and some people with Asperger’s syndrome say it is self-soothing.

An alternative suggestion is that this chronic nail biting and picking is related to sensory deficits, so a child craves sensory input, which he/she achieves by this behaviour.
Finally there is a thought that nail biting and picking is performed by perfectionists who detect faults and continuously concern themselves with even the tiniest irregularities.
Some parents cover their children’s fingers and toes in soft paraffin so it is less easy for them to pick at and lessens the damage caused. This may work as a temporary measure for very young children but is not a long-term solution.

Possible treatments:

My first call would be on a counselling therapist, preferably using cognitive behavioural therapy (see autism agony aunt answer about CAMHS for details of this approach.) This counselling trains the client to identify how they feel and how this pre-empts the picking and biting behaviours – locating and experiencing emotions is extremely difficult for people with ASDs to do and often involves explaining the physicality of feeling, such as harder breathing, flushed face etc. Non-spectrum children don’t tend to need this level of explanation; they understand emotions readily, as they understand the social world through osmosis.
Another part of cognitive behavioural therapy is to have the child keep a diary of the behaviour. This is helpful because it interrupts the behaviour and helps the individual child to indentify the frequency and trigger points contributing to the behaviour. The diary can form part of the work with the therapist and help build strategies to curtail the biting or picking. If triggers can be spotted, any program to help your son will use these to tackle these eg. alternative activities for his hands, gloves at the specific times the behaviours happen.

Medications – mainly those used for obsessive compulsive disorders, such as antidepressants. Of course your son would need to be referred back to his specialist consultant who would assess the extent of the problem and the need or otherwise for any medication.

Some people recommend B-Vitamin inositol – this would need to be assessed by a homeopath or recognised practitioner, but is believed to reduce the urge to pick or bite.
There are things that can enable your son to stop this behaviour, but I would urge you to get a professional opinion from your son’s medical practitioner, so that it can be monitored and assessed.

My son's spoken language is very poor (he's five) - I've been told it's a social communication disorder, which I gather is autism. I need something to work on with him.

Yes, autism spectrum disorders are social communication disorders (for a full explanation see my article for 'Community Practitioner' on the articles page.) The following is some sound and helpful advice from the Speech and Language Department of Great Western Hospitals NHS Trust - with thanks to Lucie Wilson, specialist speech and language therapist, for passing this to me:

Speech and Language Therapy Advice
BUILDING VOCABULARY SKILLS

Some people find it very hard to understand and/or use new words, yet we come across and need to learn new vocabulary all the time, particularly at school. Vocabulary difficulties are likely to be an ongoing area of need. Many of the ideas in this handout can be adapted to support an individual working at any level.

It is important to remember the following:

Small steps work best. Do not overwhelm the child. Focus on a few important words to enable success and boost self esteem; 5 new words at a time is a good rule of thumb.

Children with language difficulties respond best to structure. Set up consistent activities to help the child to learn words. Try to keep activities as simple as possible to help the child to focus on the words.

We are all different. What helps one child may not help another. Work out what the child finds useful and motivating to make sure that you use the best learning strategies. You need to think carefully about what topics the child should focus on. This might relate to hobbies, class topics or other exciting events that are about to happen. The child will need to have the chance to use their words in real life situations which makes their hard work meaningful and motivates them.

Regular review increases recall. Short, regular practise sessions will help make sure that new words transfer to a child’s long term memory. Go back to words you have practised before.

A little work helps learning. Don’t just give the child the answer, help them to problem solve, work things out or make informed guesses. Encourage the child to choose words they need help with and to think about how they can find the answers for themselves?

The meanings of words are very important. We use meanings to help us find the right words to use. You need to help the child to understand what words mean and build up their knowledge of definitions. This is called strengthening word links.

The sounds and rhythms in words help us to find them from memory. Working on key aspects of words such as the first and last sounds, how many syllables the word has, the movements our mouths make etc. can really help some children.

Everyone needs to be involved. It is important that everyone involved with the child knows what words they are learning and contributes to deciding what will be useful – this includes the child themselves and will help to make sure that the child’s hard work is as effective and relevant as possible. The child’s progress will be better if they are able to practise their words both at home and school.

Children’s difficulties will vary. Think about whether they are tired, excited, hungry etc.. Try not to put pressure on the child to speak.

CREATING A VOCABULARY BOX.

This is a special box in which the child keeps a set of vocabulary cards for the different words that they are learning. It is an idea that can be used at any stage, but as the child gets older they might want something more discrete, eg. a Personal Organiser that can fit into their bag.

Choose 5 words and help the child to make a new card for each word that they are going to learn. Depending on the time that you have available this might take more than one day.

Talk about what each word means and make sure that the child understands it. Clap the number of syllables and identify the first and last sounds. Talk about whether it is a long or short word.

If possible ask the child to draw a picture of the word on the front of the card. If they have motor difficulties you might offer them a selection of pictures so that they can choose one to cut out and stick on. It is important that they have some input into making the cards.

If the child is learning to use a colour coding system to help highlight the different uses of words (things, actions, descriptions etc.) ask them how they would like to show this information on the card, eg. put the correct colour dot in one corner.

Write the word on the back of the card and work with the child to build up a word web to show what the word means:

It can really help some children if you create very visual/tactile images.

If the child finds it useful then put the first sound and lines to represent the number of syllables under the picture on the front of the card.

Set aside time at least once a day to look at the words, play vocabulary games and practise making up sentences with them.

As the child’s vocabulary develops you can introduce a filing system for the box working from front to back:

1. New/difficult words
2. Words from last week
3. Words from 2 weeks ago
4. Words from 1 month ago
5. Words from 2 months ago
6. Words that I know. These words can gradually be removed and kept safe for revision at a later date.

The number of words/sections will depend on the child and how easy/difficult they find vocabulary work. When you have looked at the new/difficult words then check some of the words from further back in the box. You can slowly move the words back through the box as the child becomes familiar with them.

Remember that it is essential not to rush. If a child is having trouble learning words then think about the games and strategies that you are using and whether they are the most helpful for that child. Some children take a very long time to learn to use new words reliably and may well learn words and then forget them again. This means that it is important to review old words rather than assume that because a child used to be able to use them they will still be able to now. This system can help children to learn approximately 50 words a term.

PHONOLOGICAL AWARENESSS

Children with word finding difficulties often benefit from thinking about the sounds and rhythms of words. Further information is available in a separate handout or you can find useful ideas in the DfES Publication “Letters and Sounds”.

The key skills that help word finding are:

Hearing how many syllable or beats there are in a word
Hearing the beginning and end sounds of words
Hearing the different sounds within syllables or more complicated words
Thinking of words which rhyme

Remember, that you are thinking about the sounds, not the letters in words (eg. “sh” and “air” are both one sound. Some children are not ready to use letters and find it helpful to relate the different sounds to pictures and gestures, eg. using Jolly Phonics, or prefer to start by making patterns with coloured blocks.
 
It is essential to check that the child has the key language skills that they need to be able to do phonics activities. As a minimum make sure that they understand the concepts – first, middle, next, last and same and different.

VOCABULARY GAMES AND ACTIVITIES:

We use the meanings of words to “file” them in our memory and then enable us to get them back out again when we need to use them. Children who have weak vocabulary skills tend to need extra time and support to build up their filing system for words. Games in which the child is encouraged to think about the different meanings and key ideas behind words are a great way to help.

Name/label things during the day. Encourage the child to name things when you are out for a walk/looking at a book/on the bus/at the supermarket etc..

Sort words according to their category. To begin with you might choose simple categories, eg. animals, food, clothes. In this activity there is a clear distinction between the different groups. As the child’s skills improve then encourage them to think about more refined groupings, eg. puddings, drinks, snacks. You can think of categories for all sorts of word types, eg. Actions might be distinguished by who does them – human, animal or machine or by which part of the body you use- brain, hand, face. Ask the child to talk to you about why they are putting the pictures or words into the categories that they choose. This will help to boost their skills.

Recall words within categories. Once a child is good at sorting words then you might see if they can remember words to fit into different categories. You could hold up 5 fingers and see if they can think of 5 different plant words. If they find this hard then try starting them off by naming a few things yourself.

Fruit Salad. This is a group game. Each child chooses a fruit. The adult starts them off by naming 2 of the fruits. These children have to stand up and swap seats. The adult tries to sit on one of the seats, leaving one of the children with nowhere to sit. This child then moves to the middle of the circle and calls the next 2 fruits.

Memory Games. Games such as “I went shopping and I bought…” require children to name and recall items in categories. The repetition involved can really help some children. If you are using the game to work on vocabulary skills make a picture list as you go round. You can then use this to support children’s recall of words.

Bean Bag game. This is a group game. A beanbag is thrown to one of the children who says their name and then something within an agreed category, eg. “My name is Emma and I like eating apples.” They then choose who to throw to next.

Automatic Response/Sentence Closure. See if the child can finish off familiar pairs or sentences. For example, Cup and ….. (saucer) Bats and ……. (balls).

Find the item. This is a version of “I spy”. Look at a complex picture together (or use the setting you are in) and give each other clues for something that you can see. To begin with you could look for lots of things, eg. “Let’s find everything that is purple.” Give more specific skills as the child’s skills develop.

Question Bingo: Give the child a set of pictures. Ask questions which match the pictures and see if the child can find the correct one and give it to you. Eg. Lay out the pictures book, car, money, tree – Ask “What has pages?” “What has leaves?”

Mime. Have a set of objects or pictures and see if the child can mime one for you to guess. (This might be very hard for children with motor planning difficulties). Swap over and see if they can guess what you are miming. Get them to tell you why they gave the answer they did, eg. “you were pretending to peel the banana and then you ate it.”

Noun- Verb. Can the child think of an action word that is usually used with a word that you say? Eg. “Spoon” – “eat.”

Guess the Word. In this game you have a set of pictures/words and the child has to try and guess which one you are describing. For example: “It is an animal, it is grey, it lives in Africa or the zoo, it is very big, it has a trunk.” The child can guess at any time. If they are correct you can move on to the next picture. If they are wrong remind them of what you have already said and give them more information. This game helps children to build up their store of meanings and practise finding words from their filing system. You can use cards that you have made or commercially available games (but make sure that the vocabulary is suitable for the child’s level). To make this game harder, describe a card that the child cannot see.

Take the definitions challenge. Make a simple definitions mat. This might be a strip of sections moving from left to right or a circular board with a space for the word in the middle. Work with the child to see if you can find something to say about the word for each section of the mat. Sections to include might be:

Appearance: What does it look like? Feel like? Smell like? Made of?
Function: What does it do/How do we use it?
People: Who uses it?
Time: When do we use it?
Place: Where do we use it?
Family: What group does it belong to? Think of something else in the family.
Association: What goes with it?
Reaction: How does it make you feel?

You might need to change the sections depending on the skills of the child and the types of words that you are working with

Alternatively you could make up a set of cards with the different questions on and see if the child can work through the pack for one of their vocabulary box words.

Characteristics Game. Have characteristics/category cards in piles. Choose 2 and see if the child can name something that has both characteristics, eg. long and yellow – “banana”. Increase the number of characteristics to make it harder

Twenty Questions. This is more difficult than Guess the Word. Think of an item and the child is allowed to ask you 20 questions to try and work out what you are thinking of. This helps to generalise the skills worked on in definitions challenge.

Odd one out. Present 4 objects, pictures or words, can the child tell you which is the odd one out? Ask them to explain their choice. Choose words that are closer in meaning to make the game harder. Eg. orange, banana, book, apple (easy) or orange, banana, carrot, apple (hard) If you are asking the child to remember a list of items make sure that they are able to remember everything you say.

Similarities and differences. Put two pictures down and see if the child can tell you something that is the same about them and then something that is different. Eg. Bicycle and Car – both have wheels but a car has an engine and a bike does not. Make this game harder by choosing words that are very similar in meaning.

Word Associations. If you say a word can the child think of an associated word, eg. “cat” – dog, whiskers or kitten. You could play this game in a group by seeing how far around the circle you could get.

Opposites. Can the child think up a word with the opposite meaning to the one that you say. Eg. “Stop” – “Go”.

Auditory Association. Can the child extend their opposites skills within more defined categories, eg. “Mountains are high, valleys are………….(low). A man may be a king, a woman may be ………..(a queen)

Words with the same/similar meanings (Synonyms). Give the child a word and see how many words they can think of which have the same or a very similar meaning. Eg. BIG – huge, large, enormous. Talk about the different words and how you might use them.

Multiple Meanings (Homonyms). Talk about words that can have more than one meaning, eg. bank, trunk, wave. Can the child make up a sentence for each meaning? Looking at jokes together can be a fun way to explore this area.
 
Silly Sentences. Make up a sentence and ask the child if it makes sense. Can they tell you what is wrong? What could you have said? Eg. “John swam through the mud to the other side of the river.” (water).

Crosswords. These can be a fun way to practise thinking of words from definitions.

Rhyming “I-Spy”. Give the child a rhyme clue. Eg. “I spy something that sounds like hair.” Chair.

First sound lists. Pick a letter and see if the child can think of things from a set of categories for this letter, eg. “b”, a fruit: “banana”, transport “bus”, job: “builder.” Give the child clues if they cannot think of something by themselves.

Turn taking alphabet games. The child has to use the alphabet sequence within their answer. Eg. The Ministers Cat - “The Ministers cat is an angry cat”, “The Ministers cat is a beautiful cat” Alternatively the adult selects a category and then you take turns to think of items, eg. Animals – ant, bee, cat etc. This is much harder than simple category games.

First and Last Sound chaining. You have to think of a word beginning with the last sound of the word that someone else said, eg. “cup – paint – teapot – tiger – rabbit – toe – elephant”. This can be made even more difficult by restricting words to a single category e.g. countries

If you introduce a time element to these games it will make them more difficult.

A child’s performance will be affected by internal and external factors such as noise, stress, being tired or ill.Insert body text here ...

My daughter's been referred to CAMS by her autism consultant. What exactly is this? What do they do with autistic teenagers? How will it help her?

I think you're referring to CAMHS which is the acronym for Child and Adolescent Mental Health Services. This is a specialist team of trained counsellors, psychiatric nurses and therapists all working under (usually) several consultant psychiatrists. The team are often community based (in community hospitals or health centres) and can occasionally offer outreach services (that is, some of the team working at home with a client.)

They become involved if your daughter has any mental health issue, the most commonly associated with Autism Spectrum Disorders (ASDs) being clinical depression, anxiety or eating disorders and obsessive-compulsive disorders. Non-epileptic seizures are also related to ASDs but are less common.

The therapeutic approach in other words, their way of working with your daughter, will depend on their assessment and diagnosis. A useful counselling approach with clients with Asperger's syndrome or higher functioning autism is Cognitive Behavioural therapy, which examine how someone thinks and behaves. Often people have dysfunctional thinking, which affects their behaviours, so therapy teases out thinking processes and uses goals to change and adapt ways of thinking (cognition) and therefore alter behaviours. Common 'dysfunctional' (unhelpful) cognition is:
1. overgeneralising – that is, applying (usually bad) things that happened in one situation to all future situations)
2. magnifying negative aspects – focusing on only the 'bad' aspect of experiences or situations
3. minimising the positives in life – pushing aside any 'good' things that are happening
4. viewing life in terms of catastrophes – every experience being seen as a disaster, so their lives appear to be lurching from one disaster to another
These ways of seeing life can mean the person is unnecessarily distressed, depressed and anxious. To replace these thought patterns can be difficult because these are ingrained and habitual. The therapist may give your daughter exercises to do at home to enable her to rethink issues in real life, then discuss them with the therapist at their next session.

Your whole family may be asked to attend so-called family therapy which will enable you to examine how you function together, balances of power within the family unit and better ways of working together. The idea would be to practise ideas from the sessions at home to make some constructive changes. It is not about undermining your family, but of making your family stronger and more functional, so you can all grow together as a unit.

On a very practical level, the CAMHS team can give you strategies to manage some difficult behaviours.

I often see negative remarks about CAMHS teams on autism websites. Sometimes I think this is due to the challenges that therapy can present to families. Those people who respond positively seem to those who've engaged fully in counselling for the benefit of their child and are prepared for changes which may be necessary.

Try and go in with an open mind – good luck!

My 4 year old son will be starting school after Christmas but his diet's limited to chicken nuggets, chips (McDonalds french fries) chocolate mousse and lemonade. I know this sounds terrible, but I've tried everything to get him to eat other things with no success – in fact, it usually ends up in a meltdown. Do you think they'll make allowances and heat up a meal if I send him in with one?

Firstly, this is a good question since your problem is a common one for parents of autistic children. My own son ate only eight food items when he started at school – and this was a vast improvement on his previous diet. The difficulty lies in sensory issues – our kids are sensitive to different smells, textures and colours of foods and any of these can limit what our children are prepared to eat. However, it's important that we try and extend our children's repertoire of foods, partly for health reasons – it's hard to ensure they have all the vitamins and minerals which are essential for health if our kids are repeatedly eating a tiny range of foods. I hope that your specialist consultant or GP has referred your son to a dietitian who can advise you about the most likely sources of these dietary elements.

In addition, it's important start to to ease the tight restrictions your son has placed on his meals. Allowing him to continue at this stage will build a routine which he have increasing difficulty in breaking. Remember that he will need to survive in situations without your presence, such as school/respite, so he needs greater flexibility. Short term, his limited diet may not have caused you too many problems, but try and think long term when you're planning for your son. Imagine him in five or ten years time on an incredibly tight diet; it's useful to think like this with all aspects of your care for your son to enable you to think constructively about how to enable him into the future.

It is true that schools are obliged to make some level of allowance to accommodate disability, but I think it's highly unlikely that a school would reheat a convenience meal for your son, if for no other reason than food safety. Unfortunately, as you point out, he is only eating hot foods or sweet deserts/drinks, so if the school cannot reheat the food, the only other current options may not sustain him through the school afternoon – but may give him a 'high' due to a sudden increase in blood sugar, followed by an equally sudden drop, which may make it tough for him to manage in school because he will feel exhausted. A dietitian can explain this more fully when you see one.

Starting school is a great time for your son to be surrounded by other children eating a wide variety of foods. Even if he is eating with only a few children for sensory reasons, he will still be exposed to others' broader eating habits. Although it is often said that our children don't learn by 'osmosis' they do observe others and may radically alter his choices in his diet – even if this is only in school. It is common for children to start changes in school, but keep a routine at home in diet. Short term, this will show how he can alter, can expand and develop, then you can start to make small changes at home which will help his future.

In my own experience, my son was only allowed water at school, when he had been drinking diluted apple juice at home for several years. I resisted the school's idea of his drinking water only, but it actually worked without significant problem and now he won't drink anything else! Equally, I requested hot school meals for him and noticed quickly that he was eating different foods. Today, some 4 years after he started at his school, he eats too many foods for me to count. My son still has his favourites and would eat McDonalds every day if I let him – but I don't.

Helping your son develop and grow is an important aspect of parenting, especially of autistic children. You don't have to make huge overnight changes and those changes you do make, you can prepare your son for by using Carol Gray's social stories (www.thegraycenter.org/social-stories). Think long term. Good luck.

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