Kate E. Reynolds

  • 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

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  • 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.

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  • 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.

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  • 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.

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  • 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/

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  • 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.

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  • Speaking for NAS West Cornwall

    Many thanks to Marion Lambshead and Tracey Mears for organising my speaking for West Cornwall National Autistic Society group last week. A select group of people sat in a magnificent ball room as I spoke about sexuality education and autism. They had interesting questions, many of which emerged during a coffee break half way through my presentation.

    I am gathering questions that parents and caregivers have about sexuality education and autism, so please feel free to use the Contact Page on this website to send me your questions.

    In addition, I would like to hear from anyone who has had experience of smearing of faeces/feces (poo) and special needs children. Please use the Contact Page.

    Thank you.

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  • Looking forward to speaking in Cornwall in September.

    Kate E. Reynolds, Bsc, RGN, PGDip HEd, PGDipCouns. Kate worked for 18 years in seven locations in the UK for the National Health Service (NHS). For 7 of those years, she worked in the field of HIV/Aids and sexual health as a Clinical Nurse Specialist and Senior Counsellor, which involved training other staff.

    Kate's son was diagnosed with severe autism disorder in 2005 and she is passionate about supporting parents and caregivers with practical

    information about autism spectrum conditions and sexuality education. Kate has written eight books about autism which were published by Jessica Kingsley Publishers.

    Kate has returned to the University of Bristol to do her MSc in Disability Studies and is researching parents' roles in teaching their children about sexuality. In addition she is working on two more books about sexuality and autism.

    She lives in Wiltshire, UK, with her two children.

    The presentation will address:

    * Why it is important to teach children with autism about sexuality.

    * What and how to teach children with autism about sexuality.

    She will take questions afterwards, and bring some signed copies of her books to sell.

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  • 'Sexuality and Severe Autism' in context

    www.autismdailynewscast.com

    Study Shows Higher Risk of Sexual Abuse for People with Autism

    August 20, 2014 by Laurel Joss

    YorkA study from York University in Toronto published in The Journal of Autism and Developmental Disorders found that individuals with autism were significantly more likely to have suffered sexual abuse than neurotypical individuals. A survey regarding sexual knowledge, sources of sexual knowledge, and sexual victimization was completed by 95 adults with autism and 117 adults without the diagnosis. The results showed that 74 of the adults with autism had been raped, coerced into sex, or otherwise sexually abused, a rate of 78%, as opposed to 47.4% of the participants without autism.

    While the authors of the study conceded that the small sample may not represent the greater population of individuals with autism, they expressed concern at the high percentage of participants who had experienced sexual abuse. The survey asked specific questions regarding sexual experiences, such as,

    “Have you given into sex play (fondling, kissing, or petting, but not intercourse) when you didn’t want to because you were overwhelmed by someone’s continual arguments and pressures?”

    The survey also asked participants questions regarding how they learned about safe sex and appropriate sexual behavior, and the results showed that individuals with autism were at a distinct disadvantage. Those with autism were more likely to have gained their knowledge of safe sex and appropriate sexual behaviors from television, internet, and pornography, as opposed to teachers, parents or friends. The lack of quality sex education leaves many open to misinformation and possible abuse.

    It can be difficult for parents and teachers to know what is appropriate when educating young people with autism about sexuality. Autism Speaks has created the Autism Safety Project, which includes guidelines for parents and teachers. According to their website, comprehensive sexuality education should focus on three areas, basic facts and personal safety, individual values, and social competence. Education should start at a young age, when parents can explain the physical differences between boys and girls, and the concepts of appropriate and inappropriate touching. As children move into the teen years, social mores get more complicated, making things extra difficult for individuals who already have difficulty reading social cues.

    Luckily, there are resources designed to help parents and professionals educate children in an appropriate manner. Books such as Sexuality and Severe Autism: A Practical Guide for Parents, Caregivers, and Health Educators by Kate E. Reynolds and Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorder by Davida Hartman are available at major retailers like Amazon. Other books, such as The Aspie Girl’s Guide to Being Safe with Men: The Unwritten Safety Rules No One is Telling You by Debi Brown are geared directly towards individuals with autism spectrum disorders.

    While the results of this study are disturbing, they make it clear how important it is to educate young people on the autism spectrum about sexuality and appropriate behaviors. No one deserves to be a victim, and everybody has the right to pursue friendships and romantic relationships on their own terms.

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  • Goodreads Review of Sexuality and Severe Autism

    Kate E. Reynolds makes a compelling argument for the need for comprehensive sexual education for children with severe autism. She establishes the fact that many children are provided with little, or no, information about their sexual development. The result is often unexplained discomfort (smells, physical changes, hair, acne, etc.), sexually inappropriate behaviour, and frustration. She also highlights the increased risk of sexual abuse when people do not understand appropriate touch, privacy, their right to say no, and what is normal for their bodies.

    Reynolds is respectful, clear, and comprehensive in her approach. She deals candidly with sexual education, masturbation, and teaching appropriate behaviours. She is careful to explain the reasoning for her views (legal repercussions, risks, quality of life,etc.) and offers practical steps toward her stated goals.

    Readers should note that Reynolds is from the United Kingdom and therefore her legal references are not always applicable in a Canadian context. Also, her primary focus is on children although I suspect that her wisdom can be easily modified to suit a wider demographic.

    "Sexuality and Severe Autism" helps to fill a void in the literature around disability and sexuality. Much of what Reynolds suggests is uncontroversial as she includes a wide range off topics within "sexuality". For example, I doubt that any care provider will contest her suggestions around hygiene routines or private vs. public space. However, some of what she writes will challenge systems that have typically governed and/or suppressed the sexual lives of people with severe autism. I believe this is an overdue challenge that should be taken seriously by service providers.

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Kate E Reynolds - blogging

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