Kate E. Reynolds

  • The P words: Puberty and periods in girls with developmental delay

    Although some of our children have delays in physical and social development, it’s rare that they have delayed puberty. Despite this, research shows that parents delay giving their children information about sexuality education, usually until they experience issues, such as masturbation in inappropriate places or discovering their child is sending ‘nudes’. Ironically these behaviours often relate to lack of education.

    When to start talking about puberty

    The short answer is: the sooner, the better! This doesn’t mean bombarding a five year old with the detail of tampons but starting to cover the basics of:

    Public and private places, behaviours and conversations

    It’s a good idea to change nappies or helping toddlers to use a potty in the lavatory and naming it as a ‘private’ place, rather than doing either of these things in the public areas of the home such as the lounge. Use ‘knock and wait’ signs on private doors, talk about being in a private or public place. Limit nudity to private areas and encourage covering up between rooms, such as the bathroom and bedroom, and limit the age that children are sharing baths. By around 7 years of age most typically developing children will be asking for some privacy.

    Personal space and Ok/not ok touch

    Our children need to be aware when others touch them inappropriately as well as ensuring their own behaviours are socially acceptable. This is sometimes undermined by the myth that disabled people are all ‘huggy’ (notably those with Down syndrome) and this is part of their disability. Ensure all family and friends agree to support your house rules e.g. having different greetings for different people (hugs for close family, high fives for friends).


    Girls start the process of puberty from 8 to 13 years with physical changes, which happen over around four years in phases

    First phase:

    • Breast ‘buds’ which may be tender. If your daughter has fewer communication skills you may notice her mood altering if she has discomfort in her breasts or being unwilling to let you help her wash her chest if she has this level of additional needs. Anticipate this by giving simple pain relief.

    • Pubic hair starts to grow, and more hair on legs and arms. For our daughters with sensory issues this growth may be experienced as uncomfortable, especially if they haven’t been prepared for changes.

    Second phase:

    • Breasts continue to grow. Whatever the additional needs, young women can be involved in decisions about bras, being measured professionally to ensure comfort and making them aware that all women wear bras.

    • Armpit hair develops and pubic hair becomes coarser and sometimes curlier.

    • Periods usually start after about 2 years but girls can be as young as 8 years old so you need to prepare them early

    • Weight gain is expected as young women’s body shape changes, hips become fuller and more fat is laid on arms and thighs. Try to convey this as growing into a woman, like other girls – often girls with additional needs want to be like other girls

    • Girls sweat more, acne may occur and other skin conditions such as black/whiteheads and spots and have white vaginal discharge. It’s a good idea to establish a hygiene routine in early childhood which can be continued in puberty.

    Explaining periods using principles of education at home:

    Here’s an example of how to use key teaching principles to teach about periods and how to manage them.

    1. Be hands-on: using red food colour or coffee to replace blood at different stages of a period, then drop some in the middle of a sanitary pad. Mimic a pad on day one, day two as heaviest then coffee for the end of a period. You can do the same for tampons, showing that they only expand a certain amount

    2. Be visual: draw lines on underpants showing where the pad sits, mark periods on a calendar, show photos of different types of pads and tampons, use pictures to show the inside of a woman and how a tampon fits into the vagina. Reassure your daughter that tampons cannot be sucked up into her body, but she must remember to remove a tampon regularly possibly using an alarm or rule around how often in her daily timetable to change her pad/tampon

    3. Demonstrate: if you feel able to do so, take your daughter into the lavatory with you and show her a used pad and how to replace it.

    4. Before her periods start, have your daughter wear a sanitary pad with fluid on it so she adjusts to how it feels. Practise using the specialist bins, notably in public lavatories

    5. Use different methods and opportunities to reinforce messages about periods, such as using books and online footage about periods, as well as talking about periods in private with your child (remember this is a private subject, in a private place to reinforce the ‘private’ message).

    6. Teach how to manage unpleasant symptoms, by getting plenty of sleep, drinking plenty of fluids, using hot water bottles, warm baths or painkillers to manage pain.

    7. Be positive: periods are part of ‘normal’ maturing, growing into a young woman.

    8. Do mention pregnancy – some parents are tempted to ignore the fact that periods herald a time when a person could get pregnant, often because they feel the person may fixate on pregnancy or want a baby. Keeping a person in ignorance doesn’t prevent pregnancy, whereas equipping a young woman with information helps to prevent unwanted pregnancy

    9. Remember to say that periods come every month – they’re not a one-off event!

    10. Tampons are a possibility for young women with developmental delay. Partly their use depends on manual dexterity, ability to relax to insert a tampon, ability to co-ordinate and cognitive abilities. For some young women, tampons offer a way of managing sensory issues associated with periods and passing blood or continuing a routine of sports or activities.

    11. Involve your child in choosing sanitary pads (not towels – this term may be confusing) and tampons.

    12. Remember that boys and young men also should know about periods and why women have them.

    And finally, don’t fear or ignore puberty – celebrate it!



  • Countdown to Statutory RSE conference

    It may seem that the House of Commons doesn’t agree on much at the moment, but in March its members voted overwhelmingly for Relationships and Sex Education (RSE) to be inclusive, up-to-date and compulsory in all schools in England. In preparation for this new legislation, due to be implemented in schools by September 2020, the Sex Education Forum and the Council for Disabled Children organised a second annual conference titled ‘Countdown to Mandatory RSE’.

    Initially directed to a theatre-style auditorium, I noticed the word ‘Maths’ on the screen and shrank out of that conference room. Definitely not my subject. In the labyrinthine Friends House building (in Euston) I was redirected to a light and airy conference room for the delegates of ‘Countdown to Statutory RSE’. Not a seat was empty.

    People had come from all over England, largely teaching staff and a handful of parents. A hubbub of enthusiastic voices was interrupted by our chair, the Director of the Council for Disabled Children, Dame Christine Lenehan, who guided us through all proceedings. She was the epitome of not judging by appearances; this seemingly unassuming, almost grandmotherly figure was more than capable of ensuring every speaker stuck to time and any delegates who thought to waffle or hold court when given a microphone to ask a question were closed down without hesitation. That’s what being a chair is about. From my perspective, as the last keynote speaker, I was delighted to know that my whole 15 minutes wouldn’t be nibbled away before I had a chance to open my mouth.

    Lucy Emmerson, Director of the Sex Education Forum (SEF), led us through the latest Government guidance on the introduction of compulsory relationships and sex education in September 2020. She outlined the work of the SEF and its resources to support schools in developing and implementing RSE policies and the curriculum.

    Richard Lawrence, representing MENCAP, outlined what people with learning disabilities might consider good quality RSE education. As a person with learning disabilities, he emphasised the importance of learning about LGBT issues, whether the person themselves identified as being LGBT or simply to be aware of this population in society. This is an essential component of inclusive relationships and sex education.

    Junior Jimoh asked the boldest question of the day – who had had sex in the room (not the sexual act in the room, of course, but who of the delegates had). He spoke in a whisper from a wheelchair. His words were relayed to people at the back of the room by a support worker. Alongside Richard Lawrence, Junior gave real substance and personal experiences to what can sometimes feel like academic discussions at conferences.

    And my contribution? I had fifteen minutes to present the key points about parents and informal relationships and sex education. Sometimes it can be hard to convey the many differences as well as similarities among parents, especially in a contained time span, so I decided to use quotes from parents (with permission). For example, I contrasted the mother of a young man with autism (he was diagnosed with Asperger Syndrome) who found the whole subject of sex so uncomfortable that she referred to his having a ‘winky’ and visibly cringed when she told me that her son “wasn’t doing that” nodding towards the word masturbation in an exercise we were doing. Contrasted with this was a mother of a similarly diagnosed teenage boy who informed me that her whole family (husband, daughter, son and herself) would sit around the dining table discussing periods and sex as the topics arose.

    I briefly explored the negativity that many parents experience when their child is diagnosed or when dealing with schools. Another mother in this instance spoke of “so-called professionals” who had told her and her husband that their son “would never read or amount to anything” but, despite having a learning disability alongside autism, today their son is able to read the time from his new watch. It’s important for teaching staff to understand parents’ experiences and how this might be reflected in their dealings with schools.

    However, the main thrust of what I said was to encourage schools to work closely with parents around the subject of relationships and sex education (RSE). Not only would this support parents, who may not feel confident in broaching the topic, but might guide some parents who might otherwise withdraw their children from RSE lessons. Being clear about what areas would be discussed according to the age and development of children and young people, enables parents to engage in and support their children’s formal learning about relationships and sexuality. Knowledge of the RSE curriculum also helps parents to give consistent messages at home.

    I ran a workshop for around 45 participants with Lucy Emmerson. Enthusiasm was plentiful as ideas were bounced around each group and relayed to the entire room. What was most striking for me was the general lack of competition among the delegates, who came across as supportive and interested in gaining knowledge. In my experience that isn’t always the case at conferences and workshops, when sometimes delegates appear to be using the opportunity to demonstrate their own skills and knowledge without necessarily the desire to learn from other people. Another ‘plus’ is that the representative from the Department for Education (DfE) stayed for the entirety of the conference, participating in workshops.

    On a personal note, I attended an insightful workshop about masturbation by Claire Lightley from the FPA and was delighted to see that she spoke about ‘Things Tom Likes’ and ‘Things Ellie Likes’ as useful resources.

    Excellent conference to be repeated next year – one to look out for!



  • Chromosome 18 conference: Blog for Disabled Living

    Chromosome 18 Conference

    In June this year I spoke at a conference for the Chromosome 18 Europe which took place in Glasgow. The subject? Relationships and sex education. The target audience? Parents and self-advocates affected by Chromosome 18. The challenge? I knew a lot about the former and very little about the latter.

    What is Chromosome 18?

    Put simply, humans are born with 23 pairs of chromosomes, one of each pair being inherited from each parent. Chromosome 18 contains an estimated 200-300 genes which tell the body how to grow and develop. If chromosome 18 is altered, extra or part of it is deleted this can lead to a spectrum of conditions, some more disabling in terms of managing activities of daily living such as personal care, while others may have facial or physical problems, including heart conditions.

    Chromosome 18 conditions are relatively rare, although may be under-reported. In 2017 alone 220 families registered with the official registry in Texas, US whose mission is to educate, research and develop a supportive Chromosome 18 community. This final goal underpinned the Glasgow conference with entire families attending, making use of a well-managed creche.

    My talk - the ‘when, what and how of sex education’.

    It’s difficult to think about our children and young people developing sexually when they still enjoy playing with Disney toys or watching Pixar films. Some of us may think (or hope) that they’ll never become sexual or that puberty will be delayed by their condition or medication.

    Sexuality can be a difficult subject to broach for parents of children or young people with SEND, usually for the following reasons:

    • we feel uncomfortable about the subject

    • we’re inundated with other things to do, either for our other children or in supporting the disabled child

    • we don’t have enough information and resources

    • we lack confidence

    Many parents wait until their children behave explicitly sexually, often by masturbating or body rubbing in a public place. So issues around sexuality become a matter of crisis intervention rather than a structured, informal learning process which develops over time from childhood.

    The key is to start some aspects of relationship and sex education at an early point. Introducing concepts of privacy and private body parts can begin as soon as potty training starts, when parents can demonstrate that toilet activities should take place in the privacy of the bathroom. Enabling children or young people to do as much as they can independently, especially in personal care, can reinforce that some body parts are private. In addition, this should reduce the likelihood of sexual abuse because the young person doesn’t need another person to touch their private body parts.

    Our children may develop at different rates and parents need to use ‘teachable moments’ or opportunities as they arise to help children and young people learn aspects of relationships and sex education. This may be helping children understand what personal space is and that it varies for different people in their lives. Or it may be explaining what is meant by ‘public’ and ‘private’ things and places and that everyone has private body parts, what they are and where is a private place to touch their own private parts.

    After doing my presentation, I stayed at the Glasgow conference to run two workshops, one for parents of girls or young women and one for parents of boys or young men. The first focused mainly on periods or menstruation and whether or not girls with Chromosome 18 conditions were likely to have delayed puberty. The advantage of group work is that parents share not only experiences but strategies to manage some of the more unusual behaviours our children and young people display. The group concentrating on males, almost predictably, involves broad discussion of masturbation in public – or rather, how to avoid this happening and refocus our young people on to their own bedrooms for ‘private time’. Interestingly, the parents who attended were supportive of their young people masturbating so long as it was in private. Often, parents have difficulties accepting that their young person is sexual and try to eliminate or ignore masturbation, which can be even more problematic than dealing directly with the behaviour.

    The most striking aspect of this conference was the family feel to the event. The end of the conference was a very bonding experience when all the families joined for a photograph. A well-staffed creche ensured that whole families could attend and buffet-style meals created a community atmosphere for eating. Chromosome 18 conditions are relatively rare, so these families act as support to each other between conferences. This was a notable conference experience – and one I hope to repeat.


    Kate Reynolds is a public speaker, author and consultant specialising in relationships and sexuality education for people with autism, developmental and intellectual (learning) disabilities. She has two children on the autism spectrum and is a trained nurse, counsellor and trainer.

    Kate has written nine books for Jessica Kingsley Publishers and has recently completed two new books for such young people titled ‘What are…relationships?’ and ‘What is…personal space?’ available on Amazon or via Kate’s website www.autismagonyaunt.com.




    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.

    I put these and other practical party ideas in my JKP book Party Planning for Children and Teens on the Autism Spectrum: How to Avoid Meltdowns and Have Fun! (2012) and have a practical website for parents/caregivers: www.autismagonyaunt.com




  • 18 in 18: A Chromosome and a Year


    Doubletree Hilton Hotel is in the centre of Glasgow. It's taken me over eight hours to get here, driving bumper-to-bumper for much of the journey and wondering whether I'd have been better off running the gauntlet of north western train services instead. The other alternative was flying from Bristol, that being the shortest travel time. Disadvantage? The available flights couldn't accommodate my son's respite care at a farm several miles south of our home.

    I am greeted with a room card and, curiously, a warmed cookie. I decide to familiarise myself with the conference room in preparation for speaking the next day. Many rows of chairs behind long tables face a large screen and a small stage. The room is airy. For airy, read 'your voice becomes thin and disappears.' The staff member who has helped me tells me to take my time to practise. I have a feeling he thinks I'm going to rehearse the entire presentation. Instead I plug in my computer and listen to my voice, a feature which I describe as being nasal and dull. I'm not convinced I can make it sound more interesting. I'll check for glazed expressions when I speak.

    I've been asked here to give a presentation about relationship and sexuality education. There's nothing unusual in that. However, before this conference I had no knowledge of the rare range of conditions surrounding Chromosome 18 differences.

    A little bit about Chromosome 18

    Typically, humans have 46 chromosomes in each human cell, divided into 23 pairs. Each pair is made up of 2 copies of each chromosome, 1 copy from each parent. Chromosome 18 contains anything from 200 to 300 genes which tell the body how to make proteins which perform different and vital roles in the human body.

    In similarity to autism, Chromosome 18 causes a spectrum of conditions depending the extent of changes in the structure or number of copies of chromosome 18. As is also emphasised in ASD, each person affected is an individual with no two people presenting with exactly the same symptoms as another.

    Some of the parents who attended the conference spoke of being part of the 'Trisomy' or 'ring' groups into which they were divided for some group work. This refers to the specific nature of the alteration to the chromosome 18.

    The conference included Syndrome Coordinators who worked with these different groups, namely:

    Tetrasomy 18p

    18q -

    Trisomy 18

    Ring 18

    18p -

    The Glasgow conference was conducted as part of the Chromosome 18 Europe arm of the global organisation. In addition there is a Chromosome 18 Australasia and the largest component, the Chromosome 18 Registry and Research Society based in Texas in the United States (US). Their mission statement is to enable those affected by Chromosome 18 conditions to overcome structural, medical and other barriers to aspiring to and achieving productive and fulfilling lives. As well as a focus on education and research one of their notable aims is to foster a supportive community surrounding those with Chromosome 18. The Glasgow certainly felt like a significant component of this last goal, by providing a space for families to share experiences and support each other.

    Speaking at the conference

    The striking aspect of the conference is that whole families have attended. Breakfast in the hotel was a more lively affair than I'm used to at the events. Children and young people, some clearly with cognitive challenges, were with their families. A well-staffed creche provided care for many of the children, although one or two preferred to join up in the conference hall. One boy actually joined a very accommodating and versatile speaker on stage.

    My slot is first, at 9 o'clock. It's a difficult time slot with numerous people arriving over the first 15 minutes as they finish breakfast and access the creche facilities. I work through the presentation, giving as many tangible examples as I can without breaching confidentiality. I expect numerous questions about individual situations, so have arranged to stay all day to cover this eventuality. In the event, I find myself asked to run two follow-up workshops, one about girls/young women and one focusing on boys/young men.


    The first workshop about girls and young women is overwhelmed with mothers and one father. Questions largely concentrate on any potential differences that Chromosome 18 might make and menstruation/periods and whether or not puberty would be delayed. The beauty of group work is that carers can bounce thoughts and experiences off each other. These parents came from all over the UK and one mother had travelled from Germany, so their experiences were vast and reflected differences between counties and even the countries which make up the UK.

    The second session focused on puberty among boys and young men, one of whom attended. As is common in such workshops, the emphasis was on masturbation and how to manage it in public arenas. The discussion was mainly on prevention of masturbation by thinking of techniques to teach the young person that their bedroom is the one private place they can practise masturbation and what to do if they begin to masturbate publicly. One of the notable points is that attending parents seemed accepting of masturbation per se, which can sometimes be an issue.

    The Chromosome 18 Family

    Figures for those affected by Chromosome18 are not clear and may be under-reported. 220 families joined the registry in 2017 alone and this is likely to increase with better diagnosis and knowledge of related conditions. At the end of the day of the conference everyone posed for a (if very large) group photo. It was at this point that I realised that most people knew the names of the children and self-advocates at the conference. This cemented the feeling of family and being supportive to one another.

    If you would like more detailed information about Chromosome 18 please refer to the website: https://www.chromosome18.org



  • JKP Blog - Greecing the Wheels of Autism Education

    JKPFebruary 6, 2018

    Author, researcher, public speaker and autism expert, Kate Reynolds, spoke at an international conference in Greece last October about autism education, health and sexual education, and her book Sexuality and Severe Autism. With some cultural differences and a language barrier, things could have gone very differently, but, as Kate describes in her blog piece below, difference is just a starting point for learning and growth.

    autism educationI eyed the bag with suspicion. It had been given to me by two Greek psychologists as a ‘thank you’ for giving a presentation at a conference in Larissa, Northern Greece. Purporting to be camomile tea, it gave a stunning imitation of marijuana and left me peering over my shoulder as I returned through customs at Heathrow. This was only one of several gifts I received, including a gift box of spices, nuts and ouzo presented in a gift bag, all left at my hotel.

    A band of volunteers ensured all speakers were guided through Larissa to the conference hall and back. One also met me at the train station, having wended my way through the mountains and incredible countryside from Athens. Speakers and volunteers involved in the conference were all provided with a three course meal at a local restaurant, affording us the opportunity to make contacts across the autism world.

    The autism conference extended over two days of a weekend, with speakers covering subjects from the use of assistive technology (equipment to improve functional abilities of people with disabilities) to mental capacity and positive behavioural change. I had been invited by two psychologists, Ioannis Voskopoulos and Lambrini Ioannou, who had read my book ‘Sexuality and Severe Autism: A Practical Guide for Parents, Caregivers and Health Educators’ and are keen to have it translated into Greek. In addition, they endorsed the Tom and Ellie sexuality and safety series for young people with autism and related conditions, all books published by Jessica Kingsley Publishers.

    My role at the conference was to speak about relationships and sexuality education (RSE) and autism in a country where RSE isn’t formally part of the school curriculum, whether mainstream or special schools. In addition I was told that child sexual abuse is a subject that isn’t openly discussed or even acknowledged especially in relation to disabilities. These topics are crucial because there is evidence of links between lack of relationship/sexuality education and vulnerability to sexual abuse and exploitation. I shared the ‘sexuality’ platform with Ioannis and Lambrini, who gave a presentation about their work with couples in which one or both partners are on the autism spectrum.

    My presentation covered much of what is in ‘Sexuality and Severe Autism’ and reflected many of the experiences I’ve had with parents of children and young people with autism. Addressing child sexual abuse is essential as part of any discussions about RSE as well as the ‘basics’ of the ‘P’s’ – Public & Private behaviours, places & body parts; Personal space; Personal touch – and all in 50 minutes! To my right was a small room with a huge glass window so that the translator could see me. No sooner had I started speaking than I could hear the translation happening and the audience touching their ear pieces. Questions at the end of the presentation were many, although most had to be addressed individually once we’d left the stage, because they were specific to an individual young person. Of course there was a curve ball (there always is in public speaking) in the form of a question about paying for sex workers to service young autistic people.

    Resources are very limited in Greece, which is struggling economically at the moment. Services for people with autism are few. As with many other services, including the development of the National Autistic Society in the UK, the mother of a child with autism has spearheaded a movement to educate professionals and the public about autism, namely a not-for-profit organisation named the Association of Parents, Guardians and Friends of People with Autism. Eri Kalogeropoulou singlehandedly developed this biennial series of autism conferences, seeking sponsorship and persuading speakers to participate with little or no charge. To spread information about autism, the conference rotates around Greece, the previous one being in Athens.

    One of the highlights of the conference came in the form of a band, Aukestra, from Sunderland UK. They took to the stage at the end of the conference performing cover versions of Madonna, Prince and other pop notables. Most of the members of the band had autism, with some of them having to be assisted on stage. It was one of the most positive experiences of autism I’ve had and (on a selfish note) filled me with hope for my son’s future, especially because he has a striking resemblance to the lead male singer in the band. We were told that the young people involved had gained confidence through the process of being in the band, which is funded as a Community Interest Company and is these young people’s paid occupation. Parents of some of the young people accompanied them to Greece to support them through the many changes they would experience abroad and generally being away from routines, which, of course, most autistic people thrive on.

    This conference experience led to a request to record some information for other psychologists to listen to in training. In addition, I’ll be running a workshop about sexuality and autism in Crete in February for Masters students at the University of Crete. Then there’s the biennial conference in Greece next year. I have a lot of planning to do for these sessions but first… I think I’ll sit back and enjoy a nice cup of camomile tea.



  • Presentation at the Autism Conference in Larissa, Greece

    When 'Sexuality and Severe Autism' was published in 2011 I was contacted by two Greek psychologists, Ioannis Voskopoulos and Lambrini Ioannou. They work in the field of autism in Athens. From there, Ioannis and Lambrini endorsed the Tom and Ellie sexuality and safety series of story books and kept in contact with me. Several months ago they asked my opinion on a proposed conference about sexuality and autism, which I gave. From that interaction came an invitation for me to speak at the bi-annual autism conference, this year in Larissa, north of Greece. With an audience of occupational therapists, special needs teachers, psychologists and speech and language therapists, of course, I wanted to contribute.

    I learned that the organising committee was run by Eri Kalogeropoylou, who is the mother of an adult man with severe autism and she is also the president of the organisation. With limited resources and the economic crisis in Greece most of the speakers were not charging a speaker's fee. Apparently the admission fee for participants at the conference was to be used for the construction of residential houses for adults with severe forms of autism.

    Last Thursday I flew to Athens and took the four to five hour train journey to Larissa. Waiting on my bed at the hotel in the centre of lively Larissa was a box of Greek food delicacies beautifully wrapped. I attended the evening lecture about technology and individualising support to people with autism by Dr Herrera. The highlight of the evening was watching a band called AUKESTRA whose members are mainly autistic and whose moto is 'Don't be average, be amazing'. More than that, the expectation from most of the people I discussed this with, was that the members would have so-called 'higher functioning' autism. So much for labels! Two of the band members had to be supported onto the stage and two others clearly had labels of intellectual disability. Their founder and co-ordinator, Jack Dixon, has worked in the field for over 20 years in and around Sunderland and he also plays in the band. And, boy, could they play! Listening to their cover versions of the likes of George Michael and Kylie Minogue, neither I nor anyone with me was struck by the patronising feeling that they were doing well for people with certain impairments; on the contrary, they were simply a good band.

    The following day I gave a presentation about relationship and sex education for children and young people with autism and intellectual disabilities (learning difficulties). As I stood on stage, I could see in a glassed room by my side, the interpreter. As I spoke she translated. In my naivety I'd thought I would have to say a line, wait for translation, then speak again. Oh no, I was told just to speak - she had the fantastic ability to translate as I spoke without my having to hesitate.

    Time was tight so I couldn't say everything I'd prepared but it went down well - it was worth the worrying of the previous few days. My colleagues, Ioannis and Lambrini then spoke about couples where autism was an issue, using footage to illustrate the key points. We finished and took questions from an interested audience. The curve ball was a question about my opinion of a family in which the parents had paid for their adult son with intellectual disabilties to have the services of a sex worker. There's always a curve ball.

    From this presentation has come an invitation to design and give a workshop in Corfu next year and to return for the next autism conference in two years time. I also hope to work with my psychologist colleagues in Greece on an ongoing basis.

    None of this would be possible without the support of the University of Bristol Colston Research Travel award which funded much of the travel and the committee in Greece for funding my accommodation and travel. My colleagues, Ioannis and Lambrini also gave a selection of Greek foods to bring back, including something (tea, I'm told) that looked like I might be running the risk of being prosecuted for possession of an illegal substance!

    My thanks to everyone involved in making this conference trip possible.





    Kate Reynolds is an author of 9 books published by Jessica Kingsley Publishers, a public speaker for the National Autistic Society, a researcher at the University of Bristol and mother to a young person on the autism spectrum. Kate has also given a presentation to the House of Lords about sexuality and disability. She will be running four workshops in Wiltshire about sex education & autism, developmental & intellectual disabilities, covering the following issues:

    • How sex education helps prevent sexual abuse

    • Friendships as the basis of sex education

    • Practical ways to teach about the basics of sex education: private/public, touch, personal space, changes during puberty

    • Issues around dating, the internet, LGBTQ+ and pornography

    The dates and venues are:

    Monday 26th June, Castledown Enterprise Centre, Ludgershall

    Wednesday 28th June, Fairfield Farm College, Dilton Marsh

    Wednesday 5th July, Royal Wootton Bassett Rugby Club, RWB

    Wednesday 12th July, Springfield Community Campus, Corsham

    All workshops run from 9.30 am (for 9.45 start) – 2 pm

    All venues have ample, free parking.

    The price is £35 per person, including refreshments, lunch and supporting notes. Sorry but no children are to attend.

    For bookings or queries, please contact Kate directly by emailing [email protected]



  • 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.



  • 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



Kate E Reynolds - blogging

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