Kate E. Reynolds Autism Agony Aunt

Kate E Reynolds - Answers your questions

I hope you don’t mind me writing to you about a sexuality issue. I’ve just bought ‘Things Tom Likes’ from Amazon. It’s just what I’ve been looking for: a well-written guide to teaching my 19-year-old autistic son about masturbation in the context of issues like privacy and health. Thank you! However, discussing this with my son’s ABA therapists, I find I have a slightly different perspective to them. He doesn’t currently masturbate, and has only rarely shown inappropriate sexual behaviors (eg touching carers’ chests) which have all been successfully nipped in the bud. However, he does occasionally become stressed and hit people, and this has worsened recently. His blood tests show slightly raised testosterone. He is going away to residential college in September to learn life skills and how to share a house with peers. The team feel teaching him to masturbate may let the genie out of the bottle – that he may develop obsessive masturbatory patterns (he is obsessive about many things), may hurt himself (he has motor problems and cannot write or cut up food), and may find it hard to learn to do it in his bedroom only (it has been hard to teach him some public/private distinctions in the past). Having heard their views, my wife is inclined to agree with them. I’ve been trying to look for actual peer-reviewed evidence that can guide us, but the literature everyone quotes ( Koller R, 2000; Sullivan & Caterino 2008; Stokes and Kaur 2005) is, when you look at the actual papers, either the authors’ opinions, or based on surveys of other literature or of parents. Since you’ve obviously looked into this yourself, I’m just wondering whether you found any useful guidance, either evidence or case histories, that could help us decide how to play it. I can see the arguments on both sides!

With regards to the research papers you identified, I should point out that all three papers were published in journals that are peer-reviewed, (Sexuality and Disability; Autism; Education and Treatment of Children). In addition, the Koller paper is a review of numerous pieces of original research, the Stokes and Kaur paper is original research and Sullivan and Caterino also assesses original research by others.

It is difficult to assess without knowing your son’s level of developmental and intellectual delay and abilities to communicate. However, there are several issues to consider:
1. Research repeatedly demonstrates that teaching sex education, including masturbation, is fundamental to prevention of sexual abuse (Ballan, 2012; Dupras and Dionne, 2014). If our children understand what is appropriate in terms of touch, private versus public behaviours and private body parts, they are more able to understand what is ‘wrong’ and report it. This may not prevent an initial episode of sexual abuse but it can prevent it from continuing. It is clear from studies that children and adults with intellectual and developmental disabilities are more likely to be sexually abused, usually by someone closely involved with their support, rather than by an opportunistic stranger (Murphy and Young, 2005; Spencer et al 2005).

2. Research shows that it is more difficult to alter established inappropriate sexual behaviours, rather than initiating sex education and teaching the basics of touch and public/private (McKay 2006). Some people with intellectual/developmental disabilities can end up being housed in forensic units, because their inappropriate sexual behaviours are so extreme that intensive therapy is necessary and the public is not perceived to be safe with that person in the community. Alternatively, some people with intellectual/developmental disabilities who have problematic sexual behaviours may have to be constantly monitored in supported living with no opportunity to experience a level of independence.

3. Sexual education in the 21 century is about human rights and treating those with intellectual and developmental disabilities as people with equal human rights to those without such disabilities (Ailey, Marks, Crisp et al 2003). The history of sexuality education is littered with examples of medical interventions being imposed on individuals with I/D disabilities and punishments for any form of sexual behaviours including masturbation (Kempton and Kahn, 1991).

All the research papers above are peer-reviewed.

The following information based on my experience of parents and caregivers and extensive reading. In terms of your son:
1. If you teach your son how to masturbate, he will practise it. It may be worthwhile discussing with your wife how she feels about your son being sexual – this can be difficult for parents to accept, especially if the child is still unable to achieve some activities of daily living such as cutting up food. Sometimes, parents feel they are ‘promoting’ sexual behaviour when this otherwise wouldn’t happen. However, the evidence shows that our children/young people will become sexual – this is one way in which our children/young people are unlikely to be delayed.

2. Your son may become frustrated (and possibly aggressive/physical) as he matures and his testosterone levels rise. Masturbation may ease this tension.

3. In preparation for teaching your son how to masturbate, it’s worthwhile considering scheduling regular times for masturbation during your son’s day. One good time may be immediately he returns home from school, which is likely to enable him to manage at school without masturbating there. It’s also important for parents and caregivers to understand that masturbation may be practised several times a day by some individuals and this is ‘normal’ for them, without necessarily being classified as an ‘obsessive pattern’.

4. Ensure that your son’s day is full of various activities to which he can be redirected if he masturbates in an inappropriate place. It also ensures he won’t get bored, which can be a cause of particular concentration on masturbation.

5. In order for your son to fully relax and explore himself privately in his bedroom, he needs to be left undisturbed. If you don’t already, knocking on his bedroom door and waiting for whatever response you agree with your son, is an important lesson for him. This is part of the learning around not disturbing others in their bedrooms, especially now that he is preparing for residential living. However, this needs to be supported by his caregivers and residential support staff.

6. Preparing your son’s daily life for inclusion of masturbation, it is worthwhile discussing with your son’s ABA therapists, school and residential college how they manage issues around masturbation. They should have a written policy and a clear understanding of how to support the sexual development of people in their charge. Although it may be of variable quality and depth, sex education is compulsory in the UK, regardless of intellectual/developmental or other disabilities.

7. Ensure that masturbation and sexual health is included in your son’s care and support plan while at residential placement. Does he have his own bedroom? Will he be left undisturbed for ‘private time’? Do staff knock and wait before entering a bedroom? If he needs it, will your son be able to have lubricant?

I have a daughter who has special educational needs and she was given huge support in her primary school. She's 11 now andI'm worried about how she'll manage in secondary school.

It sounds like your daughter has had excellent support in primary school, so you both appreciate how good support can look and how much it helps your daughter manage.
It’s becoming clear that girls with autism spectrum conditions are less obvious than boys at primary school level because they are able to copy behaviours of other girls and are motivated to be social, so girls with autism tend to ‘blend in’. All the evidence shows that girls/young women feel the impact of autism much more acutely in secondary school, when communication among girls become much more complex and difficult to follow and mimic. Girls communicate in ways that are extremely difficult for someone with autism to understand – a lot of information is unspoken and relies on body language, sarcasm or understanding of social culture.
At primary school your daughter will have had key, supportive adults who will have given her stability. This simply isn’t the case at secondary school, where she’ll have numerous teachers every day.
In addition, the environment at secondary school is very challenging to anyone with autism, because of the large groups in playground areas and particularly corridors between lessons when students can be jostled around. People with autism can have many sensory issues relating to sounds (unexpected loud noises), sights (crowds can be overwhelming), smells (anything from others’ perfume to body odours can be overwhelming), touch (being too close to others, having them brush past can feel like a hard scrape) and tastes. Most of these issues can be exaggerated in a new environment, such as secondary school, where the young person can’t escape and has to attend daily.
At secondary school all students are expected to be organised. They’re under pressure to know exactly which classroom to be in, hand homework in to deadlines and do additional work with initiative, all of which may be particularly challenging to someone with a level of autism. This may be an area you can discuss with your daughter and see if there are visual ways you can prompt her to remember things on her timetable/homework.
Finally, some secondary school teachers use impromptu testing or open questioning of students in class. This ‘surprise’ element can strike real terror into someone with autism and can really raise their anxiety levels, waiting for the next ‘surprise’. Worse still is the tendency for some teachers to have students read out their results from surprise tests, thereby crushing students’ self-esteem through humiliation. It’s worthwhile having a discussion with your daughter to see if any of this is happening at school and bringing it to their attention if so.

If your daughter has a level of autism it is hardly surprising that she’s having emotional outbursts at home – this is common – because she will have had to contain a range of fears and anxieties derived from the environment at school. She may not even understand what is happening, simply that she feels overwhelmed or ‘sinking’ at school. She may feel panicked but be unable to reason why.
I would suggest that you seek a diagnosis. You already know how helpful this can be in terms of gaining support. You could also speak with the school’s pastoral service or form tutor, even if you don’t decide to go for a medical opinion or while you’re waiting for one. The following measures, if put in place at school, may help your daughter immediately if she has autism:
• Your daughter could leave each lesson 5 minutes early to manage the corridors while they’re quiet. This is a common procedure for children with different disabilities.
• Your daughter could have permission to go to the library at lunchtimes or breaks. This will give her structure during unstructured times at school and will prevent her being alone if she has difficulty mingling – being alone is when children and young people with autism tend to become bullied at school.
• If your daughter has a special interest, such as art or playing an instrument, she may be given permission to use a room to pursue these during unstructured times as well.
• If the school runs a mentoring system, your daughter may be mentored by an older student to whom she can turn if she’s bullied, at a loose end or just wants someone to be around. I realise that you have two children at the school, but this process may lessen the dependency on your son, giving him the opportunity to thrive and develop friendships at secondary school.
• Your daughter with possible autism needs to have trusted adults in school as well. This may be someone from the pastoral team. Whoever it is should be someone who is accessible.
• Some schools have autism groups who meet to support each other. It is usually better if these are not mixed groups but single gender. These groups are helpful for girls/young women to find other students who may be similar to them – although there are no guarantees because people with autism are as different to each other as typically developing people. However, it may help your daughter to know that she is not the only one who experiences the negative aspects of autism as well as being able to appreciate the positive aspects of autism.
You’re absolutely right that many professionals have less experience and knowledge about autism in females, which can mean some young women are misdiagnosed. For others, they are not diagnosed until they present with other (autism-related) conditions, such as eating disorders, stress/anxiety disorders, obsessive compulsive disorder or non-epileptic seizures and then autism is recognised as being the underlying condition.
Below is the link to a nationally recognised unit which is leading the way in diagnosing girls/women with autism spectrum disorders. They take NHS and private referrals.
http://www.autism.org.uk/services/diagnosis.aspx
You may be able to go through your own GP to a local team for diagnosis. Frankly, it may be difficult to get a referral to the national centre if the GP thinks there is a local team who could make a diagnosis.
The diagnosis will involve your daughter being assessed in different settings for different aspects of social communication, interaction, imagination and other factors. Your input will be essential as well as your daughter’s perspective and that of professionals.
As you know, good support can help your daughter’s immediate needs but also can enable her to develop strategies which will help prevent long-term mental health issues.
I hope what I’ve written has been helpful. If you want more advice or feel I can help in other ways, please contact me again.
With very best wishes and good luck in whatever you decide to do.
Kate

With thanks to AUKIDS magazine Spring 2016: My son thinks his willy is the centre of the universe and proves it anywhere and everywhere. Any ideas on how to keep him appropriate? He isn't even a teenager yet! Is this normal or down to his autism? He is not verbal but understands some signs and symbols.

This is a common issue for families involving girls as well as boys masturbating in inappropriate places. Touching their own genitals is absolutely normal for prepubescent children and needs a low-key, positive and consistent response. The difficulty for children with autism is that they don’t pick up social behaviours and messages the way that mainstream children do, so need clear explanations.

To help your son understand, it’s important to establish a form of communication with him. The ideas provided by the other panellists are useful. You need to be explicit about what we mean by ‘private’ – that being somewhere or something that other people cannot hear or see - and how it is different to ‘public’. Take care when using a ‘private’ card that it doesn’t look the same as signs on office doors – this can lead to children with autism thinking that private offices are places where they can masturbate.

You can emphasise the concepts of private and public in everyday life by repeating that you’re in a public place when you’re in the supermarket, for example. The private place for masturbation should be your son’s own bedroom, so when you are teaching him this, have a photograph of his room, not a general picture of a bedroom. When you’re out, take him to a bedroom furniture store to demonstrate that not all beds are private for him to use. If your child needs help washing or getting dressed, you can reiterate that his penis, testicles and buttocks are private as you help him.

On the subject of language, it’s important that children with autism know the medical terms for their genitals, even if you use words like ‘willy’ at home. If your son were to experience a sexual assault or sexual abuse, he needs to be able to explain clearly what happened.
It’s important to set boundaries around privacy at home. For example, teach your son to knock on doors to others’ bedrooms, then wait for a response. You can script this for your son, so he learns to enter only when he hears “Come in” or waits outside if he hears the words “Private” or “No.” You can use a system of cards on others’ bedroom doors, such as a red card for ‘private’ and a green card for ‘come in.’ The key to this is that the household agrees to do the same for your son, so he understands that if he is having private time in his bedroom, no-one will burst in without waiting for his words or respecting the colour of the card on his bedroom door.

I imagine your son uses visual timetables to let him know what is going to happen throughout his school day. If you don’t already, you can extend this to the home and timetable in some ‘private time’ for your son, allowing him plenty of time to self-explore without interruption in his bedroom.

I would also liaise with your son’s school to see if he’s masturbating at school and how they manage this. Working with school will help you to give consistent messages about masturbation. Timetabling a period of private time immediately he returns home may alleviate any self-exploration at school.

Finally I would consider preparing your son for the time when he ejaculates as part of masturbation. It may scare your son if he’s unaware that semen (not urine) will squirt from his penis when he becomes very excited or sometimes he may wake up wet in bed.
Above all, remember that this is a natural part of his maturing into a young man which you can support – and he can celebrate!

Hi Kate. I am a SENDCO at a nursery. I have been reading up on Autism and the more I read the more I can connect and feel as if I may have a lot of symptoms of aspergers syndrome. My doctors brush me off with Dyslexia and Social Anxiety disorder after originally diagnosing me with General Anxiety disorder. They did this after I went in about Autism. They told me I couldn't have it due to my ability to communicate. I've only managed this due to the fact of working in a nursery and having to communicate. I feel as if it's more than the diagnosis I have been given due to a few things including but not limited to: Compulsive Picking Disorder, Social anxiety, learning difficulties, I'm unable to keep a large group of friends or make new ones. I cannot recognise faces well/at all. I tend to focus on certian topics a lot and obsess about them in great detail. I cannot take in a long list of commands and I struggle with concentration and doing tasks set to me ! by authority figures such as my boss. I was wondering if I should go back to a different doctor or just take it as I am not autistic as a proffessional has said I can't be? I know this is long. Thank you in advance.

You could see another doctor and suggest Asperger syndrome rather than autism (many doctors think of autism as autism disorder which often involved additional needs/intellectual disabilities/learning disabilities - I don't mean 'specific learning difficulties' such as dyslexia or dyscalculia.)
I suppose it also depends on what you feel you would gain from having a diagnosis. Unless you are significantly disabled with Asperger syndrome, you would be unlikely get support state benefits (I'm working on the basis that you live in the UK). You sound as if you're managing reasonably well if you have paid employment.
Some people feel a diagnosis answers many questions about things that have happened in their lives and they use the opportunity to read about Asperger syndrome and how to manage their condition in future. Many parents of children with autism (and many other adults) remain undiagnosed with Asperger syndrome because they see no benefit to getting a diagnosis and the condition has not affected their lives in too disabling a way. For those still at school, a diagnosis can help with their learning and structures can be put in place to enhance their ability to learn and survive unstructured time, for example.
A diagnosis certainly is worthwhile if it helps you work constructively in future to manage things such as your anxiety. The National Autistic Society has a great website which is full of advice whatever your age (www.autism.org.uk). Jessica Kingsley Publishers (www.jkp.com) also publish a vast range of information for people with Aspergers.
I hope this helps. All the best.

I would really appreciate your help. I have twins, girl and a boy, aged 7 and both diagnosed with Aspergers. I have had them separated at school since nursery because of their behaviour when together. However, as all support is education based, whenever a professional observes my children at school, they are quite well behaved and so can offer no help. At home however, they display very different behaviour, shouting, refusing to follow rules, aggression etc. I am at my wits end because I feel no one wants to help. As they don't display these traits at school and no one will do a home visit, I feel like I'm banging my head against a brick wall. Myself and my husband are trying our best, we support each other and so I feel lucky to be in a stable and solid relationship but I can sense the strain on our marriage, it’s tough! Their school are VERY unsupportive, they won't even implement strategies and no-one else seems interested. I just feel very alone, I'm trying my best for my kids but getting nowhere. :-(

I really feel for you.

You don't say if your children are Statemented although they may well be if they have a diagnosis. If not, write directly to your local authority requesting that a Statutory Assessment is made of their individual educational needs. This will ensure the school is obliged to conduct an assessment of your children's progress and should highlight educational issues. The Educational Psychologist and occupational therapist may be involved in this assessment. A medical assessment will also form part of the assessment process and the whole bundle of reports form the entire Statutory assessment. If the local authority decides that no Statement of Special Educational Need is required for your child/ren, you can take the case to tribunal via the Special Educational Needs and Disability part of the UK government's justice department. Here is the link:

http://www.justice.gov.uk/tribunals/send

At home, you may be able to get support in working on strategies with your children. If you ring the National Autistic Society on 0808 800 4104 ask them if there are Early bird early intervention training schemes in your area. They are open 10 am to 4 pm Mon to Friday.

Failing any joy with the NAS I suggest you involve your health visitor who may be able to offer practical ways of helping you manage and support your children. If they are diagnosed with aspergers you should be able to get an assessment by a social worker. These days their role involves provision of respite care, so you may be able to get a minimal (and it will be!) amount of breaks to support you and your husband.

The key to this is to work out triggers for challenging behaviours, whether these are sensory/situational, for example, and develop a routine to minimise them. A low arousal approach, where you and your husband give as little response as possible to unwanted behaviours, is thought to be the one of the most effective ways of working with ASD children.

Just a thought; maybe you could join one of the autism parents groups on facebook. They are full of others, willing to give advice (some of which you should approach with caution!) However other parents can offer shortcuts and ways of working with schools that can be helpful.

All the very best.

I’ve been married for 7 years. We have two sons, both with autism. Our younger son has just been diagnosed with classic autism and his speech isn’t coming. The older one has Aspergers. The biggest problem is our marriage is falling apart due to the pressure.

I’ll run through some of the potential issues for married/cohabiting parents of children with autism in a moment. The most important thing might be to get counselling support, whether this is couple counselling or, if your husband doesn’t want to attend, counselling for yourself. I say this because some men are unhappy to attend counselling services because they see it as a form of defeat or simply not their thing – many men solve their problems themselves and don’t enjoy or engage in outside support. Women tend to be more amenable to counselling.
You can access counselling through your GP or family doctor. A counsellor won’t tell you what to do but will give you the opportunity to explore what’s happening with someone who has no vested interest in your decisions.
Having a child diagnosed with autism can be an immense blow. To have two children can be even more difficult. I’m sure you’re aware that genetics play a part in autism. I remember when my son was diagnosed, I was immediately told that an elderly uncle on my husband’s side of the family was ‘a bit like Jude’. Some of us discover that relatives who were thought ‘odd’ or were thought to have had difficulties at birth resulting in some form of brain damage. This can be very unwelcome information just at a point when we are in shock. I’m certainly aware of couples where this has proven something with which to knock or blame the other partner.
Marriages and other unions which survive having children with autism are usually those which were united and strong before any diagnosis or difficulties arose with the children. Without that strength, unions can dissolve quickly under the strain of all the challenges that are part and parcel of parenting an autistic child.
Research has shown that divorce rates for autism parents are about the same as those without autistic children until the children reach about the age of 8 years. This is because parents can manage short term with the challenges of bringing up young children and their dependency and disruption to the marriage. However when the children reach 8 years and over, they are less dependent and allow the parents to reignite their relationship and start doing ‘grown up’ things together. This draws the couple together. Ultimately the children will leave home and this is all part of a process of children drawing away and becoming more independent.
In families where there are autistic children, particularly those on the extreme of the spectrum, they don’t usually go through the rites of passage of other children. So they don’t tend to grow more independent, or at least not at the same rate as non-spectrum children. This dependency continues the strain on parents. So research has shown that divorce rates in marriages with autistic children are much higher than those with no autistic children, once the children reach the age of 8 and above.
There are some ways you can improve your ability to withstand the challenges ahead as a couple:
1. Sing in unison.
This may seem obvious but it’s very easy to slide away from joint decisions when there are many challenges and important decisions to make. In my experience and those of parents I’ve worked with, there is little guidance about choices in educational or medical approaches, for example. It can feel like walking in the dark, groping around to find your way. The internet holds so very much information that we can fell swamped by alternatives with no real sense of direction.
This can all add to the difficulty of joint decision-making in a marriage.
2. Acknowledge grief.
Grieving is something we all experience in many different areas of our lives, not solely when someone dies. In autism, we can grieve all the hopes and dreams we had for our children and which they may never achieve. As parents we will grieve at different times and in different ways. Sometimes a father may grieve that a son will not be a ‘mini-me’ as mothers may do with autistic daughters. Acknowledging grieving and supporting the other partner through this can bring couples together and strengthen the union.
3. Priorities.
It’s very easy for our autistic children or children to dominate everything in the household, to the detriment of all else. This can often include sleeping arrangements, where many families end up playing musical beds each night to try and pacify an autistic child. It can mean that families never go on outings together because the child with autism will disrupt the day and bring it to a premature end.
One thing to hold onto is that most young autistic children can be hyperactive and have many behavioural problems until around 8 years of age. Many improve beyond that point. Knowing this may give you the strength to manage challenges. Measures such as social stories, rewarding positive behaviours and implementing boundaries in the home can all help if put in place consistently by you as a couple.
As far as your immediate question is concerned, ask for counselling. This may help you both progress through grief and enable you to make decisions to the benefit of the whole family. Good luck!

My son is 7 years old and has classic autism. His behaviour has become more and more aggressive in the last few months to the point where his school is isolating him a lot of the time to stop him hitting other children. He’s worse at home than in school.

I always work from the perspective that all behaviours have a purpose; the important thing is to work out that purpose and try to satisfy it in a different way. Aggressive behaviours can occur for any of the following reasons for the child:

• To gain attention
• To get something the child wants, either directly or indirectly
• To evade doing something the child doesn’t want to do
• To see the reaction the behaviour causes in others
• As a reaction to ‘black and white’ situations where the child has little understanding of the social context and that grey areas exist in life
• To relieve frustration and anger in the absence of more constructive ways of managing a situation
• To reduce stress and tension caused by hormone levels (during puberty) or anxiety

I would advise you to seek a medical opinion to ensure aggressive behaviour does not have an underlying medical cause. This could be, for example, diabetes, epilepsy, clinical depression or even a basic discomfort such as chronic constipation. Due to the nature of autism spectrum disorders, it’s hard for children to communicate when medical conditions start, leave alone how they progress, so it can be difficult as a parent or caregiver to notice early signs.
Parents, caregivers and teachers can learn methods to reduce aggressive behaviours. As always, these should be implemented consistently to benefit the child and maximise the effectiveness of any measures taken.

The goal is to reinforce positive behaviours and reduce unwanted, negative behaviours.
One of the most useful things you can do is keep a diary of your son’s aggressive behaviours. You may have been asked to do so by a health professional and I recognise that sometimes these tasks can seem onerous when you’re already busy. It may even seem that your son is aggressive most of the time so keeping a diary is pointless (I’ve certainly heard this from other autism parents). You should include the following in your notes about your son’s aggressive behaviours:

• A precise definition of the behaviour(s). What exactly does your son do? To whom is the aggression directed?
• Note how often the behaviours happen.
• What precedes the aggressive behaviour? Are particular people present? Does his aggression present in the same way each time?
• How do you tend to deal with his aggressive behaviour?

Sometimes when we pull apart behaviours it becomes clearer what the child is gaining. Remember that ‘attention’ can be negative as well as positive. So if your response to his aggression is dramatic, he may repeat the aggression to revisit that response, which he may find stimulating or exciting, for example.
If you respond by altering what you were doing just prior to his aggression, this may be what your child wants. For instance, he may act aggressively each time you prepare to leave the house. If his aggression leads to his staying at home, he may repeat the behaviours that enabled him to remain where he wanted to be.

If your son is able to communicate verbally and understand language, a direct approach may help. Sometimes to tell a child what their behaviours look like and how they frighten or upset others can identify the impact of their behaviours and help them stop. Be precise, so “When you get angry your face gets red and looks like this (pull the face) and you stand stiffly like this (imitate the posture) When you throw things and scream, it scares your little brother.” Comic strip stories may help emphasise this, too (Carol Gray www.thegraycenter.org).

Again, if your son has sufficient communication skills, you may be able to give him strategies to use when he feels angry or frustrated, if these are the causes of his aggression. For example:
• Counting to 10 before reacting
• Taking deep breaths, which you can practise with your son when he isn’t angry
• Punching a pillow. Again, you can help him practise this when he isn’t angry
• Running away from the situation if it’s in the house
• Using a practised phrase, such as “I’m too angry. I need to leave the room” which will enable your son to focus on words instead of other actions he might feel like doing

It’s also a good idea to liaise with your son’s school to see how they are managing these behaviours, especially as you say his behaviour is better at school. It's also important to discover what being in isolation entails and if this is appropriate for your son. Tackling difficult behaviours in the same way at school and home will give your son consistency.

For further information visit www.challengingbehaviour.org.uk

The most important thing to so first is seek medical advice to exclude underlying medical reasons for your son’s aggression. All the best!

My 4 year old autistic son is non-verbal. We’ve been told to use visual timetables in the house. How far should we take this and does it really work? He also does PECS and has done for a year but still isn’t speaking.

Social communication works on several levels, involving body language, facial expressions and gestures, but the main way is through the spoken word. Using the Picture Exchange Communication System (PECS) has been shown to be effective with many non-verbal autistic children but some research has shown that around 27% do not respond with any level of speech (Bondy and Frost 1994). PECS itself incorporates the autistic child selecting an item on cards, which show a symbol or picture of the object with its name underneath, and presenting the item as a request to a trained adult. Over time the child learns to present an entire sentence including verb/’doing’ cards as a request. The objects and sentences are repeated by the trained person and this reinforces the name of the item and structure of sentences. The information the child receives about the object can lead ultimately to expanding the child’s vocabulary and to rudimentary ‘conversations’ with repetition of key words. PECS introduces the idea of exchanging information, which is a concept many autistic children cannot perceive unless they experience it. There is no explicit aim of producing speech with PECS, although many children do speak. So it is worth continuing using PECS even if your son is not verbalising yet.

Visual timetables give a structure and predictability to your son’s life, whether this is in school, home or elsewhere. Consistent daily routines form one of the most important planks of an autistic child’s giving your son a more solid perception of how the social world works. This foundation forms the basis of future learning about the world. You may have heard professional discussing that your son has his own ‘agenda’ meaning that he wants to engage in only his narrow range of activities or interests and won’t follow adult instructions to do anything else. Visual timetables incorporate individual and family activities, such as family meals, so they support your child in loosening his ability to adhere only to his agenda. This, of course, is imperative in a household with other people. It may seem unimportant now when he’s young, but imagine how his agenda might feel in 3 years or 10 years time. Some families find themselves imprisoned in the home by an autistic child’s agenda.

Without these visual timetables autistic children can have more emotional outbursts (so-called ‘meltdowns’) usually due to uncertainty or unpredictability of events. Again, this can be very limiting and make carers feel unable to attend social events due to their child’s potential behaviours. I expect you have been given a format to follow. Most visual timetables are numbered in order and/or have times given on a clock (therefore visual) alongside. Many autistic children finish tasks or other things they are doing more readily if you ‘countdown’ to the end of the activity so they have ‘5 minutes...2 minutes...’ etc. This is especially the case if your son is enjoying one thing and may not want to move onto the next, for example, switching off the computer or television to go to bed.
Social stories and comic strip conversations (Carol Gray www.thegraycenter.org ) are also helpful (see last Agony Aunt answer).

As your son gets older, with these devices in place at home, his ability to communicate will increase. Try not to get too desperate for actual speech, because this may unwittingly put pressure on your son. Remember to give his time to answer or comment on anything you’ve said. Try modelling answers without telling him he’s wrong in any attempts he makes at speech (see previous Agony Aunt Answer). Modelling involves repeating the key words and placing them in a proper sentence so your son hears key words said correctly and in context of sentences. But always do it with praise ‘Good trying’ for instance, which will invite him to try again in future without feeling he will get into trouble or be criticised. Non-verbal children often perceive more about our reactions to them than we realise. Lack of speech doesn’t necessarily equate to lack of awareness.

There are no hard and fast ‘rules’ about how quickly or slowly verbalisation can happen. Some researchers suggest that around 50 % of autistic children remain non-verbal. Certainly, I was told if my son didn’t speak by the time he was 4, he never would, then by the time he was 7, if he weren’t able to speak, he wouldn’t. He is now 11 years old and forming sentences; he may miss out words and his vocabulary is very limited but he is continuously developing verbally and I don’t believe there is a reason why he can’t continue to do so. Age limits to our children’s developments are artificial and of little help, in my experience.

The best of luck!

I hear a lot about social stories and comic strips and how helpful they are for autistic children. Unless I buy a book, I can’t seem to find out what they are and how they work. Please also give an example of one.

Social stories were developed by Carol Gray (www.thegraycenter.org) as a means of informing people with autism spectrum disorders about social situations, using their perspective as the key to writing them. These stories describe a social skill, a concept or a situation in a way that gives meaning for autistic people.
Social stories build on natural behaviours and social skills and seek to address situations which autistic people may otherwise find confusing or even frightening. New situations can be alarming for many reasons to a person with ASD. It may be sensory issues, such as lighting, loud noises or smells which trigger overload in the autistic person. Social stories can be used to explore the fact that these sensory factors may exist in a situation, but also how the autistic person can manage these. Throughout my book ‘Party Planning for Children and Teens on the Autism Spectrum’ I promote the use of social stories as a means of reducing anxiety in young autistic children by preparing them for new or potentially difficult situations.
Social stories convey information more clearly when words are combined with pictures. They are then referred to as ‘comic strip conversations’. These can be drawn by you, can be photos or sourced from magazines, for example. The most flexible way to do it is to draw images, so as new situations arise or if you need to prepare spontaneously, you need no more resources than your own hand, a pen and paper. You can also develop a character that your child can recognise as him/herself. My son instantly knows himself in my drawings because he has the same hairstyle each time; he is a stick man with four straight pieces of hair sticking upright from stickman’s head. You might dress your character in a t shirt with your child’s first initial on it. If you’re consistent your child will soon know him/herself.
Many autistic children confuse how to express themselves, whether in the first person (‘I do/have am etc’) rather than the third person (‘Jude/Francesca does/has/is etc). So it’s good practice to word social stories in the first person. So the story might say ‘when the school bus arrives, I get my books and I say goodbye to my Mum.’
Comic strips can be used to show what is actually said between people, what their feelings are in response to a situation or conversation and people’s intentions. All these areas are a challenge to those with autism.
Social stories are constructed in a specific style and format. The idea is not to modify behaviour but to increase the autistic person’s understanding of situations, leading to learning more effective responses. Often in children, their responses will be what are commonly called a ‘meltdowns’ or, as I prefer to refer to them ‘emotional outbursts’ which characterise youngsters with autism.
Carol Gray suggests that at least half of a social story should affirm something positive, that the ASD child does well, for example. The story should explain what to expect in certain situations and why. The ‘why’ part is useful because it can enable autistic people whose perceptions are different to non-spectrum people, because ASD incorporates a lack of social imagination and ability to anticipate others’ emotions or responses. Social stories can bridge this gap in understanding.
Social stories can be made up of the following types of sentences:
Descriptive – the where, what why and who of the situation
Perspective – the beliefs, feelings and thoughts of others in the situation
Directive – gives possible responses to something in the situation in a positive way
Affirmative – used to emphasise the importance of key messages in the story
Co-operative – examines how other people can help the person with autism
Control – offers a chance to put in information that gives a personal slant to the story
Partial – incomplete sentences which allow the person with ASD to contemplate what might happen next
The idea is to have a maximum of ONE directive OR ONE control sentence and 2-5 of other types of sentence. This all sounds complicated, but once you’re into the swing of it, social stories and comic strips will come easily. Of course, when you see the results in terms of better understanding in your child, you may find they flow from your pen.
An example of a social story:
When I go to Jack’s party, I will give him a present, like all the other guests (DESCRIPTIVE)
I might like to keep the present because we bought Jack water balloons and I like playing with those (CONTROL)
I might be upset when I give Jack his present. This might upset Jack. (PERSPECTIVE)
But I will be ok (AFFIRMATIVE)
When it’s my birthday party I will get lots of presents that I like. (DESCRIPTIVE)
Good luck!

My 12 year old autistic daughter has always self-injured, usually picking at the skin around her fingers. Lately this has got much worse. She’s started chewing her hands and fingers, causing open wounds.

With any behaviour it’s worthwhile recording when they occur. Is there anything that seems a precursor to her chewing that you can see or appears to be in relation to anything else happening in her life? Have there been any major changes that may have upset her routines or distressed her, which you can identify?

Then examine what happens after she’s chewed her hands and fingers. What’s your response? Sometimes our responses actually can promote behaviours we don’t want to encourage by giving extra attention, whether positive or negative. The Challenging Behaviour Foundation gives very useful advice on specific aspects of self-injurious behaviour.

See: www.challengingbehaviour.org.uk

I would start by thinking about your daughter’s age. Menstruation starts any time between 9 and 15 years of age and is starting sooner than in previous generations due to better nutrition. Your daughter’s behaviours could be due to menstrual cramps either in her back, her abdomen or both. Unless she is able to clearly communicate with you, she may be in a level of pain which she can’t explain.

Your daughter may not have started her periods but can still be experiencing discomfort or pain. It’s worthwhile seeing your family doctor, to ensure any painkillers you give her aren’t contraindicated by any medication she may already be on. Usually simple over-the-counter remedies would be effective and it may be better to give them on a regular basis, while she is menstruating, rather than waiting for symptoms such as her chewing. Check with your doctor first that there isn’t another underlying cause of the symptoms.

My son is obsessed with drawing minions from the film ‘Despicable Me’. I have a horrible feeling it can only get worse when the sequel hits the cinema later this year. The entire living room and kitchen are overflowing with his papers, usually with only one picture and a lot of blank space. He won’t leave the house without a bag full of the things. Help!

Dare I say ‘ditto’ to everything your son does; my 10 year old does the same thing, with minions being top of his list at the moment. It’s common for our autistic children to obsess on particular objects or characters. Some parents complain that they can’t find another toy about the same subject. Others complain that they’ve adapted their child’s bedroom or playroom to accommodate the obsession, for the child to change wholesale the object of their interest.
It’s common for parents to try and enable their autistic children to ‘loosen’ their connection with special interests. It can feel uncomfortable to have a child who is wrapped up in a fascination to the exclusion of the outside world. For some parents, they feel shut out even more from their child’s world because they don’t understand why their child is so obsessed with thing, especially if this is an ‘odd’ object, such as wheel hubs or ladybirds(bugs).
The best I can say not to try and eradicate the obsession. This would distress your son immensely and will undermine your relationship. It is possible to use his fascination to enhance your bond with him. For example, if you join in with his obsession by mirroring what he does, you may gain insight as to what he gets from obsessing. This is referred to as ‘joining’ by the Son-Rise program (www.autismtreatmentcenter.org) or the process of ‘intensive interaction’ which encourage we parents to ‘see’ our children’s worlds and experience them as they do. The process of mirroring is believed to raise our children’s self-esteem by valuing them as they are, rather than trying to pull them into a mainstream social world. I should also say that mirroring is not the same thing as imitating, which brings connotations of teasing and certainly not of trying to gain understanding of another’s world.
Whenever your son is engrossed in his fascination with minions is a time when you can expand his learning. For example, with my son, I sometimes do the drawings and put different facial expressions on the minions, giving us an opportunity to talk and emotions expressed on the face. I may draw words coming from their mouths and ask my son if he can read what I’ve written. I’ve started to use ‘bubbles’ above the minions’ heads to demonstrate thought, which is a difficult for many autistic children to grasp. So I may have a minion with a speech and a thought bubble for my son to read and for us to discuss.
Without knowing the age or level of communication or social skills your son has, it’s hard to give concrete examples of what may work with him. You, of course, are in the best position to see what might help advance his skills. You could try counting minions or counting how many eyes there are on the page (bearing in mind there are one and two-eyed minions) or taking away or adding minions. You could ask your son to write a sentence about minions. The point is to use his special interest benefit him, rather than viewing it as odd and trying to stop it.
It sounds like you’re feeling overwhelmed by this particular fascination. There certainly are ways of limiting how intrusive your son’s interests are on the rest of family life. Try some of the following ideas but remember this will entail change, which our children can find difficult or even frightening. Introduce changes using pictures to explain what’s going to happen, it’s often helpful to countdown to when you want a child to do something, especially if the child is highly interested in the activity. By this, I don’t mean a simple ’10, 9, 8...’ but allow your son time by giving 10 minutes notice, then 8, then 6 minutes. Also, be consistent in countdown, any pictures you use and expectations of what he is to do, so your son gets into a new routine.
1. Have a specific container (box/bag) for your son’s drawings, in which you encourage him to place all pictures. You could do this at regular times during the day, so the living areas don’t become cluttered with his papers. For example, ask him to collect them at every mealtime as well as at bedtime.
2. Limit where he can do the drawings to one living room. I would suggest that this is not his bedroom, because this will restrain any social communication your son has with the rest of the family. You can reinforce this with pictures and/or a notice in the room where he can draw and where he can’t. After he is in a new routine, you probably will be able to remove these signs.
3. As I’ve said, obsessions can be used to enhance our children’s communication and understanding of the social world. You can slow down your son’s rate of production, as it were, by focusing on helping him learn through his drawings.
4. If your son has many toys associated with minions, you can either try limiting the number he can bring into the living areas at any one time, or buy him smaller versions which don’t take up so much space. Smaller toys are also handy for when you go shopping or on other outings. Leave the larger versions for his bedroom.
5. You can use your son’s obsessions as a reward for doing something social. For example, sitting at the dinner table to eat. This would be a time when his fascinations should be placed to one side. Family dinners are one of the most social times which will improve his social skills.
Remember that making changes can be a slow process but can be achieved with persistence and consistency. Good luck.

Our 5 year old son is about to start school in a specialist learning centre set in an ordinary school. They are talking about 'inclusion'.

Inclusion is a concept which assumes children with special needs will benefit from being educated within mainstream classes which are appropriate to their age, whether or not they are able to work on academically as high a level as their peers. Special needs children will be supported within the classroom and only removed from that environment if resources cannot be provided for them.

One of the arguments against inclusion is that it requires suitable qualified and trained staff. In addition, in order to individualise the support given, there may be logistical difficulties. In times of austerity, this may be a particular problem because inclusion can be perceived as a more expensive than funding a separate facility. Special needs children may be placed in special units where there are few opportunities for their interaction with peers.

Specialist learning centres or resource centres based within a mainstream school give the impression that special needs children will be included, but effectively they may be segregated. In my son’s school I was under the impression that he would be included in mainstream education whenever possible. In practice, I had to take his case to mediation and threaten tribunal to force the school to put him with his mainstream peers for a third of his timetable. Within a week of this happening, he was a different child. He asked for new shoes (the slip-on variety his same-age peers were wearing) and a backpack instead of his ‘uniform’ school bag (like all the boys in his mainstream class). He has blossomed in his verbal abilities and the process has fostered friendships and his desire to have friends from school come home.

There are many documented advantages to inclusion, such as:
• Improved communication skills
• Increased self-awareness
• Development of friendships
• Fostering a feeling of ‘belonging’
• Some commentators have noticed that Individual Education Plans become more age-appropriate

For mainstream children, inclusion has the benefit of deepening their understanding of diversity and citizenship through experience, which is probably the most potent way for humans to learn. Some parents of mainstream children and some teachers may feel it is too disruptive to the class to have inclusion and it may affect other children’s learning.

Self-contained units have disadvantages. For example, some children may be non-verbal, causing greater challenges to language development for others. Additionally, being exposed to maladaptive behaviours may cause some children to copy these behaviours, instead of those of same-age peers. Autistic children observe and copy over time. Non-verbal children or those who do not make eye contact are still absorbing the environment they exist in and the behaviours that happen around them. My son’s verbal abilities spiralled down when he was placed with non-verbal autistic children in a resource centre at his mainstream, having been with more verbally able ASD children. He also adopted numerous new autistic behaviours to add to his own repertoire, all learned from his new set of peers.

Another issue which may be ignored is that of same-age autistic peers, if a child is to be placed in a resource centre or specialist learning centre. My son, for example, was placed with 4 and 5 year old children when he was 10 years of age. As a hormonal, physically developing child, I question the appropriateness of that decision.

Inclusion, in my opinion, is one of the most beneficial and constructive ways of enabling autistic children. As long as it is well managed, other children’s education will not be affected and, indeed, having children with special needs in a class room can enhance the experience of mainstream children.

However, you need to ensure that a given number of hours of percentage of your son’s timetable is identified as being in inclusion, and have this written into his Statement of Special Educational Needs. You may otherwise find that any inclusion may be reduced according to teaching needs of the mainstream school. Good luck!

My son was diagnosed with classic autism when he was three. I already had another younger son by this stage and I want to know if there are any signs I can look for, to see if he also has autism.

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