Kate E. Reynolds Autism Agony Aunt

  • Blog about smearing for Jessica Kingsley Publishers

    “My child has autism and has started smearing… what can I do?”

    This isn’t as unusual as you might think. The problem is that people don’t tend to discuss smearing, which can be anything from wiping a hand covered in poop on the wall to literally plastering excrement over furniture, bedding, the child themselves or other children/animals nearby. Sometimes the child may even eat poop. It’s a smelly, dirty and deeply embarrassing behaviour for many parents and caregivers, so you don’t feel able to admit your child does it. Instead you become more and more isolated and find it difficult to visit friends or family or even leave the home in case your child smears.

    So what can you do if you find yourself confronted with smearing?

    1. Keep your response as low key as possible. This is incredibly easy to say when you’re faced with poop everywhere, overwhelming odours and usually an active poop-covered child/young person to manage. It may make you feel better to vent feelings of anger or despair, but this will be a temporary result. Try to remember that if you give a dramatic response this may encourage further episodes.

    2. Yes, there’s the clear up. Again, keep your reactions level and low key. Some advice online suggests that you should get the child/young person to either partially or wholly do the clear up, usually with the parent admitting that the practise hasn’t stopped the smearing but just made the parent feel better. I disagree with this practise, partly because there is no evidence that it works and it is based on a misguided assumption that the child is behaving vengefully. What to do about Smearing examines the many and varied reasons for smearing behaviour which make it clear that this sort of punitive practise isn’t constructive.

    3. Try and work out what happened before the smearing and document it because it’s easy to forget exactly what happened the day after or the day after that, especially if there have been more episodes. Think: Was the child/young person in bed and had been straining to poop on the toilet earlier that day? How occupied was the child/young person before the smearing happened? Was anyone else there, such as a sibling? Where is the child/young person when it happened– on the toilet? In bed?

    4. Really look at what the smearing involved. Think: Is there a lot of poop or a smudge? Has the child/young person got a lot of poop on their hands or are squeezing it between their fingers? Is the poop smeared over the genital area or their face or mouth? Is the poop hard or soft? Document this information as well because otherwise episodes all blend into one awful, despairing experience.

    5. What do you usually do when smearing happens? I’ve mentioned the response level is important, but also think: Does the child/young person achieve anything, such as being moved somewhere else, or getting company? Again, write this down. It is much easier for a professional (or you) to work out the cause of the smearing if there’s a diary to examine.

    What to do about Smearing has one or two surprises for readers, I’m told. Perhaps the most surprising thing is that smearing has many possible causes and therefore many ways to help improve the situation or eradicate the behaviour. Controversially, I don’t endorse restrictive clothing, such as pinning children into back-to-front ‘onesies’, which can undermine positive approaches to smearing and may worsen smearing behaviour. Additionally, smearing isn’t something that only people with intellectual disabilities or more severe forms of autism do; there are some cases in which the person has so-called higher functioning autism.

    The causes range from sensory input gained from smearing, to lack of toilet skills, medical issues (notably constipation), sexual abuse, other sexual reasons, lack of occupation and psychiatric conditions. In most instances the child should be referred for a professional opinion to work out the underlying causes.

    In What to do about Smearing I outline a range of practical things we can do as parents and caregivers to tackle smearing. Tackling smearing needs positive behavioural approaches and efforts to pinpoint individual issues. It can be utterly exhausting having a child with additional needs and more so when the behaviours you’re dealing with feel as repulsive as smearing can. However I hope this book gives you ideas and knowledge to put into practise and an understanding that you’re not alone. Smearing isn’t “just part of disability” as many people think; it can be minimised, eradicated and further episodes prevented.

    Read more...

    0 comments

  • Hugo Reynolds

    Our darling dog, Hugo, died two days ago. He wasn’t a ‘proper’ service dog; he wasn’t trained to support my son who has autism with intellectual (learning) disabilities. We didn’t have to wait months on a waiting list for Hugo to be allocated to us after he’d been trained as a service puppy. At the time I bought him, I wasn’t even sure how my four year old son would respond to having a dog. However, I knew my daughter, who was seven, was desperate for one.

    I spent an entire year looking at different breeds, weighing up the pros and cons of each. I’d never had a dog before. We have a small house, so we couldn’t have a large if beautiful golden retriever, which I always dreamed would be the dog for me. So I scoured around the small to medium breeds.

    The decision to get Hugo was a process. My son jumps at home; this gives him sensory input and is a common behaviour among people with autism, like rocking or head banging. Such behaviours could alarm a dog. Part of the motivation to get a smaller breed was that I believe that any dog can get shocked or frightened and ‘turn’ so the smaller the mouth, the less injury that can be caused if that happens. My son’s behaviours also encouraged me to buy a puppy, which could grow up with my son’s jumping and unpredictable noises. The puppy had to be a known breed, I decided, so I could predict its behaviours as far as possible.

    We saw pictures of a litter of five Cavalier King Charles (CKC) spaniels online. This was the breed I wanted; small, friendly family dogs with a good nature, soft fur and those huge baby eyes. The only female had gone and one of the males. My daughter wanted a Blenheim, that’s a brown and white CKC spaniel, so we had to choose between the two in the litter. The owner/breeder had both the father and the mother in their home, so I felt assured these were not puppy farmed puppies. She informed me that one of the puppies could never be shown or bred from because it had poor markings with too much white on its head. In addition, this puppy was the runt of the litter, it being very small and weak. Clearly, this was the puppy for us. It wasn't until some years later that we realised our new puppy also had a squint!

    It took forever for Francesca and I to name the puppy. We simply couldn’t agree. Eventually the owner/breeder told me all the other puppies in the litter had a name so she and her husband had started calling our puppy ‘Coco’ because the whiteness of the top of his head gave our puppy the appearance of a bald head and his red/brown ears looked like a wig. These features gave our puppy the appearance of Coco the Clown. This information actually made us focus our efforts on names that ended in an ‘O’. Francesca thought of Hugo.

    My four year old son didn’t use words when we got Hugo. I dislike using the term ‘nonverbal’ because Jude made sounds, just nothing that approximated words. He would make a loud sounds and point a lot at things he wanted. It wasn’t until he was six that my son started to make specific sounds for objects, such as “A, a, a, “ for apple. However, when Hugo arrived, my son started making the lilting sounds like a conversation as he lay on the floor with our puppy. That’s how their relationship went, lots of lying around and noise-making.

    Francesca, having Asperger syndrome, found difficulty making friends, so Hugo filled a huge void, giving her an unconditional welcome whenever she came home from the harsh realities of school without friends. When she went on residential school trips, I would write a ‘diary’ from Hugo for her to take, complete with a paw print, some fur and a note begging her to come home soon because he couldn’t stand being alone with the ‘Big Un’ (me).

    We developed a Bristolian voice for Hugo, despite the fact that we bought him in Wales. Francesca was the ‘Little Owner’ and Jude was the ‘Little Un’, even when he grew to be over my height! Hugo’s name morphed from being ‘Hugo-a-go-go’ to ‘Hugo-baloogo’ to ‘Gingangongly’, ‘Doggy-doo’ and various other terms of endearment. But to my son, he was always ‘Udo’.

    Hugo was the one ‘person’ who could persuade my son to walk any real distance. As Hugo slowed down over the years, Jude (my son) was able to attach the lead to his collar and actually hold the lead firmly to walk down the street just ahead of me. Hugo’s presence and the need to look after him, reinforced for my son the importance of stopping at roads, watching for cars before crossing without ambling or stopping midway across.

    When things were tough outside our home, both children found comfort in pressing their faces into Hugo’s fur, stroking him and lying on the sofa with him. Although he knows not to do this with other dogs, Jude used to put his face to Hugo’s and shake as he does when he (Jude) presses his face against mine. When I had chemotherapy Hugo stayed at my side on the bed, rather irritatingly insisting on burrowing beneath the covers, getting too hot then reappearing to lie on the top of the bed before cooling off and burrowing again. I can almost feel his soft fur against me now.

    On Monday I took Hugo for a walk. It wasn’t long, just long enough to get in among the trees and do one of his favourite things, bark up at squirrels and wood pigeons. He hadn’t walked this far for nearly two weeks. This would be his last walk. Hugo became extremely breathless overnight and I rushed him to vets. On Tuesday morning I rang my daughter from the vets. I lifted Hugo’s downy ear and held the phone to it so she could tell him that she loved him. I took a photo of Hugo to show my son, so he could understand how ill Hugo had been. Then I sat with him while he took his last breaths and I told him what a great dog he was, how important he was to all of us, how we loved him and we’d never forget everything he’d done with and for us.

    RIP Hugo Reynolds January 12th 2007 – February 21st 2017

    Read more...

    0 comments

  • What the **** is Normal?

    'What the **** is Normal?' is the title of Francesca Martinez's book. The comedian, speaker, actress and writer is probably best known in the United Kingdom for her role in the television series Grange Hill about a secondary school in London. As she described in her performance last evening, Francesca credits the television series with saving her from the bullying she was experiencing at the hands of her peers at mainstream secondary school. Instead of school , she spent 9 months per year filming. An outspoken critic of segregation of any form for disabled people, Martinez described her intense dislike of special schools, which she feels removes disabled people from sight and marginalises their lives. She continues by emphasising the benefits to mainstream children of playing and learning alongside disabled children as well as vice versa. Mainstream children learn to empathise, be patient and accept difference; disabled children grow in self esteem by being accepted and acknowledged for their talents, according to the scenario Martinez outlined engagingly with humour and deference.

    I wondered how many of the audience were in my position, my son having tried mainstream school and now being in a special school for his secondary education. This move always filled me with both doubt and guilt. I was well aware of the arguments for my son remaining in mainstream education. I had seen my son's behaviours alter for the better once he was included in mainstream classes for a few months from a resource centre for children with disabilities. The problem was that I'd had to threaten the mainstream school with a legal tribunal to get them to include my son in mainstream education, which I had thought was happening from the moment my son started at the school four years before. Inclusion did not mean inclusion in this state school. Inclusion simply meant being in a room located within a mainstream school. Real inclusion means disabled children are primarily in mainstream classes with a very small proportion, if any, of their school week in a special class for only specified and justifiable reasons. As a Year 6 child, my son was placed with reception, year 1 and year 2 children in a resource centre with a very patient and kind teacher. The school stated that he would hamper the learning of his peers in mainstream school. Although they claimed to agree with me that my son should be included with his mainstream peers and should not be with children several years younger than himself, both the educational psychologist and the SEND representative from this local Council informed me they had no power to force the school to instigate these changes; their role was simply to advise.

    Since he's attended a special school my son has learned alongside peers of his own age. He has grown in confidence. Yet he is marginalised from the very community he will be living in after he completes his education.

    My physical and mental health has improved without an ongoing battle with mainstream schools and the local authority. I felt nothing but relief when my son started at the special school, where I felt staff understood the nature of disability, how to develop children's independence and focus on their talents, not their 'deficits.' Staff also treated me with respect even when I didn't always agree with their actions.

    I often wonder what might have been different for my son had he properly been included in a mainstream school. I also wonder how the UK will ever progress towards closing special schools and including all children together in state schools. I do believe that including disabled children in mainstream education can be beneficial to all children. Only political action can address this issue.

    Read more...

    0 comments

  • Forthcoming book 'What to do about smearing'

    Addressing the often hidden, yet not uncommon, behaviour of faecal smearing among children and adults with autism and developmental and intellectual disabilities, this practical handbook shows how to tackle this often embarrassing and difficult issue in a positive way. Informing parents and caregivers of the many causes of smearing, the author offers tried-and-tested, everyday approaches for managing this behaviour. This supportive guidebook includes down-to-earth advice, helpful picture narratives, examples of how to prepare and use diary sheets for behaviour analysis, and practical exercises that can be carried out at home. There is also advice on what to do if a child ingests faeces, and dealing with persistent or recurring smearing. With a focus on positive low-arousal responses and featuring the voices of parents who have experience of their child's smearing, families will feel supported and confident in identifying the causes of smearing, and be able to choose and carry out appropriate preventative approaches. This will also be a useful resource for professionals who encounter smearing behaviour, including social workers and SEN and teaching staff

    Read more...

    0 comments

  • Reviews of Tom & Ellie books by Healthy Books

    What's Happening to Tom?

    In simple and unambiguous text and bright pictures, often explicit, we see Tom beginning to grow up. First he notices hair in different places, then he gets spots, his voice begins to change, and he needs t shower every day and use deodorant. When he has a wet dream, he knows to change his pyjamas and bed sheets and have a shower, and he also knows this happens to all boys. He gets erections too, but it is good to know they don't last long. Because Tom is on the autistic spectrum, he needs to realise that these changes will all come about gradually: "like a snail sliming along the length of a soccer pitch." And thye do end with becoming an adult, which means positive aspects such as wearing more grown-up clothes, shaving "like his dad", and being able to stay up late. While aimed at those who are autistic, the book will be useful to others with learning difficulties because of its avoidance of euphemisms and the explicit qualities in the illustrations. Highly visual. Available from Amazon, from good bookshops, and from the publisher at www.jkp.com

    Read more...

    0 comments

  • Feature in Emirates Woman

    Her autistic son caused

    a strain on her marriage

    Kate Reynolds

    The mother of an eight-year-old autistic

    boy wrote explaining that the child was

    sleeping in bed with her and her husband

    most nights. This often resulted in her

    husband sleeping in the spare room and

    was fundamentally affecting everyone's

    night-time routine. The relationship between

    the couple was strained, partly due to lack

    of sleep and the general pressure of having

    a child who had extreme tantrums, and

    partly because the husband was angry

    that his wife wasn’t fixing the problem.

    The letter was one of the first one I’d

    answered that really made me look at

    my own marriage, which had dissolved

    within months of the diagnosis of our son

    with ‘classic’ autism at the age of three.

    I slept with our son most of the time in

    his bed, because he would wander or

    get distressed without someone there

    – a common complaint of parents of

    autistic children. One of the parts in

    the letter that struck a chord was that

    this woman’s husband expected her

    to “sort out” the problem, which was

    similar to my husband’s expectations.

    When I first read it I felt sick because

    it touched what I hadn’t recognised

    were still raw feelings, even six years

    after my marriage dissolved. I had to be

    careful because I still felt anger towards

    my ex-husband and I had to be wary of

    conveying this in my response. Looking

    back at my advice, I’m surprised at how

    balanced it was, considering the strength of

    my feelings. But it made me remember how

    I felt at the time – the realisation that autism

    was going to be a long-term issue led me

    to choose between my son or my husband.

    Ultimately, it was a decision I had to make.

    Read more...

    0 comments

  • To what extent do parent carers of children/young people with autism act as facilitators around their children’s sexuality education.

    EXECUTIVE SUMMARY

    “A dissertation submitted to the University of Bristol in accordance with the requirements of the degree of Master of Science by advanced study in Disability Studies (MDS) in the Norah Fry Research Centre in the Faculty of Social Sciences and Law.”

    Stakeholders

    This executive summary is written for the key stakeholders in the dissertation, these being:

    1. Five parent carers living in Wiltshire, who consented and gave their time for the author to interview them.

    2. Wiltshire Parent Carer Council, which advertised for interviewees on the author’s behalf.

    The author wishes to convey her deep thanks to all stakeholders for their part in her dissertation.

    Aims

    The aims of the dissertation were to examine the role of parent carers of children and young people with autism surrounding sexuality education in the family and how sexual expression is supported by parent carers.

    The objectives of the dissertation were:

    1. To examine the existing literature about sex education for children and young people with autism, including attitudes, timing of sex education and what helps and hinders sex education at home.

    2. To conduct, record and transcribe semi-structured interviews with parent carers about issues surrounding sex education

    3. To analyse the data (the interviews) by identifying themes in the transcripts

    4. To relate the themes to the existing literature, to see if they reflect findings in the existing literature or contradict them

    5. To reach some conclusions and propose some recommendations about how the findings of the dissertation might be used.

    Research Procedure

    The author conducted a broad literature search, entering key words into search engines. She included all relevant research papers, published in journals since the year 2000 and seminal papers published before that year.

    The author conducted five interviews, which involved information about seven children on the autism spectrum aged between 9 – 16 years. She used a participatory exercise with interviewees to encourage thinking broadly about the issues and to stimulate discussion. All interviews were audio recorded, anonymised and transcribed by the author.

    The author examined the transcripts, noting any themes which appeared in them. These themes were linked to the existing literature and quotes were used to illustrate key points.

    Key Findings

    Participants agreed that four aspects of sexuality education were of high priority for all their children/young people, these being:

    1. Contraception

    2. ‘Bad’ friendships/relationships

    3. Strangers

    4. Sexually transmissible infections

    The author identified the following key themes from the above process:

    1. Safety issues were identified as being

    i. ‘Bad’ friendships/relationships

    All interviewees voiced concerns that their children might be vulnerable to being abused by their peers and not being aware enough to identify what was happening. Some participants gave examples from their children’s lives.

    ii. Stranger danger and sexual abuse

    Four parent carers cited stranger danger - predatory sexual approaches from strangers to the child – as being a greater risk than that from people known to the child, although this is the opposite of what is demonstrated by research evidenced in the literature.

    iii. Online safety

    Interviewees cited cases of grooming online and one case in which a young person misunderstood the context of passionate kissing seen online. All seven children spent considerable time on online activities each day, with parent carers having a range of knowledge and skills related to the internet and safety issues.

    iv. Mental health

    Participants all outlined worries that their children might lack self-esteem or be socially isolated and lonely due to their social communication difficulties. Some young people were being supported by the local Child and Adolescent Mental Health Services (CAMHS) for mental health issues apparently rooted in their autism.

    2. School issues were noted by interviewees, namely:

    i. Sex education in the classroom

    ii. Parent carers’ relationship with the school

    There appeared to be little communication between school and parent carers about sex education unless there was an issue, such as inappropriate sexual behaviours in public by children/young people or texting sexual images of themselves to their peers. However, none of the parent carers prevented their sons and daughters from attending optional sections of Sex and Relationship Education in school and all participants felt positively towards their child’s school, although one described not ‘trusting’ schools in general to deliver sex education satisfactorily.

    3. Issues with parent carers, notably:

    i. Which parent does the sex education at home

    Without exception, it was mothers who engaged in the sex education of their children/young people, regardless of the children’s gender. Fathers played either a far lesser or no role in the informal sexuality education of their children/young people.

    ii. How sex education happens at home

    Of particular note is that sex education at home was often engaged in as a response to sexual behaviours, rather than being a proactive process. Only one parent carer had a program of proactive sex education at home and another two taught their young people opportunistically about sex education.

    iii. What parental attitudes are towards sex education.

    Parental attitudes seemed to shape the emphasis on particular areas of sex education, whether this was in school or in the community, as reflected in the literature. This included any issues surrounding being gay, lesbian or bisexual, which appeared to be addressed only if the child/young person disclosed such a sexual preference.

    Different emphasis was apparent, in that some mothers with sons did not consider ‘wet dreams’ to be a priority to discuss, indeed two imparted that they had not thought this subject to be relevant or necessary. Some voiced that menstruation and pregnancy education was not a priority for their sons, since these were issues for young women.

    Conclusions

    This is a small research project, only involving five participants with a total of seven children on the autism spectrum among them, so findings cannot be generalised. However, the following conclusions about the findings were reached:

    1. Fear of safety issues created an environment in which children and young people in the study were monitored closely and given little room for taking risks and learning from these experiences. These children and young people had very limited social opportunities to develop friendships or a social circle because of concerns that they might be victimised. Parent carers had some misconceptions about the relative dangers of strangers versus those already known to the child/young person, which could be addressed in formal training sessions for parent carers about sexuality education. Interestingly, participants seemed to have less concept of how to protect their children/young people online, which is a growing area of concern for the possibility of grooming and sexual abuse. Mental health issues appeared to be derived largely from issues in social communication, according to interviewees, issues which lack of social opportunities could exacerbate. This is reflected in the literature where it is suggested that the concept of ‘vulnerability’ can be self-fulfilling because protection can prevent risk and useful life experience.

    2. What seems to be relatively weak communication between schools and parent carers can undermine the effectiveness of sexuality education because messages may not be consistent between home and school. Waiting for sexual issues before collaboration between schools and home takes place seems problematic.

    3. The dominance of female parent carers in delivering sex education at home may be less helpful to boys/young men who might benefit from a male role model in terms of sexuality. Furthermore, men may prioritise differently to women and would have personal experience of wet dreams, for example, giving them greater insight to enable their sons to manage this aspect of sexuality.

    4. All but one of the interviewees expressed a positive response to the opportunity to discuss sex education and how it related to their children/young people. Indeed, participants seemed to convey a significant amount of personal information during the interviews and asked the author many questions about factors related to sex education. Several parent carers voiced their desire for further opportunities to share information and experiences with their counterparts. This is reflected in the literature and could be a constructive means of supporting parent carers in supporting their children and young people.

    Read more...

    0 comments

  • JKP Halloween Blog

    JKP author Kate Reynolds (Party Planning for Children and Teens on the Autism Spectrum: How to Avoid Meltdowns and Have Fun!) gives tips about planning and enjoying a ‘Not-So-Scary Halloween’ with your child on the autism spectrum:

    Not-So-Scary Halloween

    Three years ago I took my two children to Disneyland in Florida for Halloween. At the time I had no idea what a big deal this holiday festival was in the States. By the end of Mickey’s Not-So-Scary Party, complete with eerie smoke-filled alleys, tubs of candy treats, dedicated Halloween costumes on every well-known Disney character and grand finale of the Headless Horseman, I could have no doubt.

    Not that my son, who was 7, non-verbal and has ‘classic’ autism, appreciated much of the goings-on; he spent a good portion of the party in his disability buggy under his ‘blankie’ with a miniature Mickey and Donald. He didn’t seem scared; more bemused. By contrast my 10 year old daughter, who has Asperger syndrome, quizzed me about every nuance of the party with the tenacity of a detective. Explaining why it’s fun to pretend to have blood spewing from your chest or dripping from fangs can be tricky (but not treaty).

    Having children at apparent extreme ends of the autism spectrum may seem a challenge during seasons such as Halloween when we know that sensory issues, unpredictability and pure lack of comprehension of the social world will be exposed. In fact, as a single parent, I’ve learned that simple, consistent strategies work for them both.

    Whatever the social gathering or seasonal event, my goal is to enable them to develop socially so that they can be as independent and socially robust as they can be when I’m no longer here. Some parents never take children to social gatherings or parties – but these are excellent tools for gradually increasing a child’s tolerance of sensory issues, change, social awareness and social interaction with non-spectrum children. ASD kids are constantly developing, just a different rate to non-spectrum ones, so I believe parents’ work is a process of enabling them.

    I prepare them for what’s likely to happen. I draw a story and read this to my son, usually placing a photo of him on one of the stick characters so he grasps this as his reality. With my daughter, I used to read Halloween story books, but this year she’s going Trick or Treating around our tiny group of neighbours s we’ve practised the route she and a friend will use. We’ve also rehearsed what ‘trick’ she might have (yes, she only has one) and how conversations might go. I usually compare chatting with tennis; you take it in turns, with neither person hogging the ball.

    As part of helping my children develop a secure sense of ‘self’ I’ve used mirrors. Initially, my son would copy my mouth movements to form words, slowly developing the knowledge that he was separate to me. Now he’s able to wash his face, comb his hair and check his clothes using a mirror. Masks and costumes became less scary to him when he could observe that he changed appearance in a mask but was still himself underneath it. This last exercise was something I did with my daughter as well, although both children had difficulty generalising this to other people wearing masks or eerie costumes.

    Over the years I’ve worked on increasing their exposure to fireworks. From hiding indoors in the early days, to peeking through a window, to peeping out from under a blanket but being outside, my son can now watch an entire display, occasionally blocking his ears but with no emotional outbursts (meltdowns). My daughter’s ability to adapt to the assault on her ears of loud bangs has been easier because she always enjoyed the visual display.

    Of course, the alternative is to throw a Halloween party. There is the great advantage of controlling the environment, including any food or treats, which may be critical if a child is on a special diet. You can help prepare any autistic guests by using the party invitation as a story to show what’s going to happen and can be read prior to the event. You can lessen the assault on your autistic child’s senses, have a quiet area if it all becomes too much and introduce the scary aspects of Halloween in what Mickey would describe as a Not-So-Scary way.

    Read more...

    0 comments

  • Jack Howes' article about Girls and Women on the Autism Spectrum

    In this wonderful world of ours, having autism, like I do, is tough. People with autism endure lower rates

    of employment, higher rates of bullying, enough social f***-ups to make Mark Corrigan seem like a charming, polished socialite and a lifetime of explaining to sceptical, uninformed people that autism doesn’t make you f***ing Rainman. It’s hard.

    And as with most things in life, it’s even harder if you’re female.

    Males are diagnosed with autism far more than females, with the ratio generally regarded as being around 4:1 male to female. With asperger’s syndrome, it’s a ratio of 15:1. Females, for various reasons, are not getting diagnosed with autism and are therefore not getting the help and support they need.

    There are many reasons why females are diagnosed far less than males. For a start, females tend to be better at masking their symptoms than males are. In The Complete Guide To Asperger’s Syndrome, Tony Attwood states how at school girls are generally better than boys at socialising, usually because girls are expected to be more social and hence they cope with this by copying other behaviours, using "intellectual abilities rather than intuition to determine what to say or do” in Attwood’s words.

    This means they end up masking the effects of autism and through no fault of their own make it harder to get diagnosed. Perhaps the main reason though why females don’t diagnosed is quite simple – men.

    As Carol Povey, Director of the NAS’s Centre for Autism states “Past research into autism has concentrated overwhelmingly on males, meaning that the way we understand the condition, culturally and clinically, tends to be based on the experiences and behaviour of men and boys”.

    The more that research into autism has a male bias, the more it sparks off a self-perpetuating cycle where all strands of autism, from the way it’s diagnosed, to its symptoms, to the way it’s portrayed in the media, to the way it’s treated, has the same bias towards males over females. In the words of Povey, it “Could be seen as a form of unintended structural discrimination.”

    I would argue that autism from its very start has been about males and its agendas dictated mostly by men. No different from, say, politics or the police or the media. And when that happens, however hard people try to achieve equality, you’re going to end up with inequality. See the aforementioned point of females being expected to be more social than males, which in its own way has a negative effect on rates of diagnosis.

    As an example, this study states how, for example, 85.8% of the participants in autism research by respected journals were male. The most common ratio suggests that 1 male is autistic for every 4.3 females, so using that figure, 76.75% of males should be participating just to stack up with that ratio – and that ratio is almost certainly wrong anyway in that it under-diagnoses females. 

    This other study here states how females are diagnosed both later on in life than males and are also more likely to be misdiagnosed or not diagnosed at all. Their autism will be palmed off as some sort of personality disorder or mental illness instead.

    This account in The Guardian in January is proof of that, as it took twenty four year old Mina three years

    and seeing three separate GPs to get a formal diagnosis. One doctor said she couldn’t be autistic because she had a boyfriend. Another had to look up in a book what asperger’s was.

    I myself can corroborate this lack of understanding – when I asked my GP to be referred for an autism diagnosis three years ago my doctor spent ten minutes talking about something called aspergerllosis. This was after he’d waffled on telling me about the time his sons had been on Countdown and met

    Carol Vorderman, showing me the relevant photos. Just useless. If my parents hadn’t had to fork out over £300 for a private diagnosis beforehand, I highly doubt I’d have got a formal autism diagnosis. And I have the advantage of being white and male.

    GPs and the entire medical profession have a helluva lot to answer for. This is proven by how in the NHS

    guidance to handling people with autism, there were no provisions for women’s differing needs. This interview with Monica Blakemore, founder of Autism Women Matter highlights further problems with an overall lack of understanding of autism and how “It's a sort of double discrimination: being female, and being disabled.”

    Further evidence of a brutal ignorance of women with autism comes from Laura - currently a student at a

    Russell Group university (her name has been amended for this article at her request) who was diagnosed with asperger’s syndrome aged eight. She was lucky her diagnosis was fairly quick - her mother was ‘pushy’. She had a hard time at primary school “I've always had very strong interests for certain lengths of time. At that point it was animals and I wanted to read about animals. We had to keep a reading diary and note what we read. After noticing my lack of variety, she banned me from reading them. Not that she could stop me but I was such a slow reader that I would then be accused of having nothing in my reading diary. I got so scared of reading that I physically couldn't read anything more complex than say, Animal Ark for years.”

    Parties? “I spent a lot of time helping the adults or collecting the sparkly paper from confetti cannons.”

    And playtimes? “Playtime was always the worst. At first it was okay. It was a time that I could spend alone, talking to the trees or playing ‘ball on the wall’ but that was time that I could get away. Then the teachers got involved. It was hell. I was first of all forced to join games I had no interest in with people who had no interest in me. The teachers also banned "ball on the wall". It was like an outdoor prison.”

    Things got better for Laura at secondary school, as she learnt to act more neurotypically, plus simply the

    teachers and fellow pupils were nicer and more understanding. But her experiences show how ignorance, not just of girls with autism but of autism generally, is still a scourge on society In TV, film and literature too, there is a bias towards male characters. I decided to go on to Wikipedia and count, of the fictional characters they said were Autistic, how many were male and how many were female. In the odd case when a male and a female character received equal billing, I gave both genders a point each.

    These were the results:

    Films - Male – 43   Female – 17

    Books – Male – 20  Female – 5

    TV – Male 21 -  Female - 9

    Obviously that research isn’t perfect – it’s Wikipedia for god’s sake. As a random sample of autism in the

    media though, it’s not a bad test. Overall, you get 84 male characters and 31 female – better than the 4:1

    ratio usually perpetrated about which gender has autism, but still with enough male characters that the

    stereotypes of autism that are spread to the watching or reading public will be overwhelmingly male

    ones.Females being better than males at masking their symptoms also has a dangerous tendency to lead to secondary disorders, which means that a possible autism diagnosis gets forgotten. 

    For example, anorexia is a disorder that is heavily linked with autism. According to Autism Agony Aunt and

    author Kate E. Reynolds, twenty to thirty percent of anorexic patients are perfectionists and exhibit rigid

    modes of thinking and behaviour, symptoms which ally themselves with autism. And when a diagnosis

    of anorexia is made, all the eggs tend to be thrown into that particular basket and an autism diagnosis is left by the wayside. Plus, as Reynolds says, “Anorexia offers girls with ASD (Autism Spectrum Disorder) what they perceive to be a positive outcome because lack of nutrition prevents menstruation and

    physical development.”

    It’s not just anorexia that is either mis-diagnosed or merely a secondary disorder emanating from

    autism. Depression, schizophrenia and other conditions are often diagnosed, when the real prize, that of an autism diagnosis, never arrives. It’s the autism equivalent of kissing your sister – you kissed a girl, but yeah, it’s your sister.

    There is also the school of thought that autism in itself is a male disorder. Simon Baron-Cohen,

    cousin of Sacha, is one of Britain’s most renowned autism experts and over a decade ago now came up with the Extreme Male Brain theory. He was the brainchild behind a series of tests that suggests that males score higher at systemizing, females score higher at empathizing, which according to him proves that autism, with, it’s apparently low empathetic tendencies, is an inherently male disorder, hence the ‘extreme male brain’ title. And this of course would explain why so many more males are diagnosed with autism.

    There are lots of criticisms of this theory. As Reynolds says “Terming the thesis as the 'extreme male

    brain' introduces gender into the issue when adhering to a description of signs and behaviours might have been more appropriate”.

    Also the theory doesn’t appear to take into consideration sociological influences. Boys and girls are treated differently from the day they were born so it’s hardly surprising if, for example, a one year old boy will spend more time at a car going round than a girl would at the same age. Cars are seen as being for boys, not for girls, and even at that age it’s not surprising if that message permeated to them. This article from Baron-Cohen in 2003, listing stereotypical hobbies for men and women as ‘anecdotal evidence’ I think bears out a general lack of consideration for sociological factors.

    Plus, the theory intimates that people with autism lack empathy. I profoundly disagree with this. It’s not a

    matter of lacking empathy, it’s a matter of understanding. Here’s a personal example of that lack of emotional understanding rather than a lack of empathy. When 9/11 happened, I was eight years old. I saw on the news that thousands of people has died, but I didn’t really know what dying meant and was mildly annoyed that CBBC had been replaced by footage of crying people with the same replay of a plane flying into a building. I simply didn’t understand what a terrible event it was.

    Three weeks later, my granddad died. I was devastated. I remember crying in class a month after he passed away. My granddad dying made me realise what death was, its effect on people, and I was just as upset asanyone else would be if their beloved granddad had passed on. To say that those with autism have lower levels of empathy is wrong and also dangerous for how those with autism are regarded by the wider world.

    The theory may not be in itself sexist, but it probably doesn’t help the plight of women with autism if their

    disorder is seen, rightly or wrongly as a male disorder. What do autism and a Yorkie Bar have in

    common?

    They’re not for girls.

    So what can be done to improve matters? The consensus is that earlier diagnoses are imperative. In Reynolds words “All research shows that an earlier diagnosis of ASD, followed by appropriate interventions, will optimise the person’s life chances.” 

    Povey states the issue is one of understanding. She says that “We need to improve understanding of autism in every sector of society so that the unique difficulties women face will be recognised and more will face a diagnosis.”

    Steps are indeed being taken to fulfil these wishes. The NAS has been involved with Autism in Pink, a project looking into the experiences of women with the goal of developing new approaches to support and education. Dr Judith Gould, who works at the Lorna Wing Centre for Autism is amending the questions asked of girls during the diagnosis process. Plus the Lorna Wing Centre has seen an increase in women seeking diagnosis in recent years.

    You wonder though whether the answer to this particular conundrum lies not in tackling autism, but in tackling structural sexism. Men still dictate autism’s agendas and the way it is diagnosed and treated is based around the whims of males. Laura agrees, saying “We live in a society made out of gender roles/stereotypes and social norms and the diagnosis of autism is no different.”

    A big effort is needed so that more females are diagnosed. More research, more studies and perhaps most of all, a concerted effort to reach out to women and change the male biases that, under the surface, still dominate the world of autism.

    Over Christmas, my good friend @JonnyGabriel lost his brother. Suicide is the biggest killer of males between the

    ages of 20-45 and it is often because men are afraid to talk about their problems. If you have any spare change,

    please donate to the Campaign Against Living Miserably (CALM) at the link below so that people out there won’t

    endure the pain my mate has endured. 

     https://www.justgiving.com/Roger-Sharples/

    Read more...

    0 comments

  • Speaking at St.Nicholas Special School, Wiltshire. UK

    Many thanks to school nurse, Sue Barnes, for organising my presentation to parents and teachers at St. Nicholas School in Wiltshire. I spoke broadly about sexuality and autism and the need for parents and schools to liaise about sex education to best support our children with disabilities.

    I am collecting questions from parents about sexuality education and autism/disability so please send your questions to me using the Contact Page of this website.

    I am also interested in hearing from anyone who has experienced smearing faeces/feces (poo) with their child. Please contact me in confidence using the Contact Page.

    Thank you.

    Read more...

    0 comments

Kate E Reynolds - blogging

Photo crop (passport)

You are viewing the text version of this site.

To view the full version please install the Adobe Flash Player and ensure your web browser has JavaScript enabled.

Need help? check the requirements page.


Get Flash Player