Tag Archives: Autism

Clueless Clarence Book Review

Our librarian Jan reviews a new book available to borrow for free from our postal lending library.

clueless-clarenceClueless Clarence: 5th April 2007
by Zoe Hunter and Leslie Roberts
ISBN 9781785076091
£14.99

Meet Clarence and his family. Clueless Clarence is a book of the innermost thoughts of a 15 going on 16 year old boy with mild Autism. From a day by day diary written over the course of 2008 to a selection of his poems. This is a quirky fun and imaginative book that joins fact and fiction. Any parent with an autistic child will recognise the anxieties and the preoccupations and any teenager with a diagnosis will recognise that they are not the only one.

Mental Health and Well-being Conference Write Up

Improving Mental Health and Wellbeing for Young People with Autism, ADHD and Learning DisabilitiesOn the 28th April 2016 we held our Annual Conference at the Royal Society of Medicine in London on ‘Improving Mental Health and Well-being for Young People with Autism, ADHD and Learning Disabilities’.

Our aim is to make sure that the needs, and voices, of young people with these conditions are not lost in the current discussion surrounding mental health.

With the exceptionally high calibre of professional speakers, including a number of young people and the variety of topics covered, hopefully delegates felt that they enhanced their knowledge and understanding by attending our Conference.

The first session of the Conference was ‘Risks to mental health and well-being in children and young people with a neurodisability’. This part looked at the current research that is being conducted around genetic and biological causes of mental health disorders, mental health problems in children with intellectual disability and co-occurring psychiatric disorders in children with Autism Spectrum Disorder. The speakers in this session were:

Dr Andrew Cuthbert (Institute of Psychological and Clinical Neurosciences, Cardiff University)

Professor Richard Hastings (Centre for Educational Development, Appraisal and Research, University of Warwick)

Professor Emily Simonoff (Institute of Psychiatry, King’s College London)

After a superb lunch, the keynote address centred on ‘Mental Well-being and involving young people in defining the agenda’. This presentation was given by:

Dr Cathy Street (The National Children’s Bureau), accompanied by Jack Welch and Kiri Joliffe (NCB Young People Advisory Group)

This session focused on the benefits of children and young people’s involvement and participation in mental health and a short video was shown where young people talked about what it means to grow up happy. Both Kiri and Jack spoke, very bravely, of their own experiences of living with mental health issues and autism. They also stressed the importance of listening to young people.

Following a short break, the final session ‘Working to improve mental health and well-being’ comprised of talks given by:

Mair Elliot

This remarkable young lady gave an extremely powerful and moving speech about her own experiences of living with autism, mental health issues and psychosis.

Dr Jane Waite (Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham)

Jane looked at how to spot the signs of anxiety disorders and effective interventions.

Dr James Cusack (Autistica)

James provided an update on the research projects that the charity are currently funding into mental health in autism.

Professor Tasmin For and Dr Astrid Janssens (University of Exeter Medical School)

Tasmin and Astrid gave details of a new project focusing on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children’s services to adult services which will use national surveillance, qualitative and mapping studies.

At the end of each of the sessions the Conference Chair, Professor Stuart Logan (Cerebra Professor of Paediatric Epidemiology, PenCRU at the University of Exeter), fielded questions from delegates which gave them the opportunity to clarify matters arising from the presentations. The speakers were able to answer these questions clearly and make the subject matter understandable.

You can watch the Q&A sessions here.

Additionally there were a number of exhibitors at the Conference who included Leigh Day, Hyphen Law, Tomcat, A Stitch Different, The Clarity Partnership, Autistica and The Challenging Behaviour Foundation. Alongside these there were information stands for our Academic Chairs at: University of Birmingham, Cerebra Innovation Centre, University of Exeter, University of Leeds and University of Warwick. Information was also available regarding our Family Research Ambassadors Projects.

Cerebra would like to thank all of the speakers and exhibitors for giving up their time to join us on the day. We are particularly grateful to have received sponsorship from:

  • Leigh Day
  • Foot Anstey
  • Hobbs Rehabilitation
  • Lyons Davisdon
  • Hyphen Law
  • Tomcat
  • Autistica
  • The Challenging Behaviour Foundation
  • A Stitch Different Community Group
  • The Clarity Partnership

Give me the support I need and watch me thrive

Mair Elliott

Mair Elliott

Nineteen year old Mair Elliott gave a passionate speech at our recent conference on ‘Improving Mental Health in Children with Autism, ADHD and Learning Disabilities‘.

Mair was diagnosed with autism aged 15 after experiencing severe mental health problems. At the conference she shared her experiences:

“Truth be told when I was asked to speak to you today, I was a bit intimidated. I don’t have a fancy doctorate, I don’t even have a degree and I haven’t been doing any experiments in my lab. I am not in charge of any services, I don’t represent any particular organisation standing in front of you here today.

But what I do have is an Autism diagnosis, and I have diagnoses of Depression, Anxiety, Anorexia Nervosa, and Psychosis. We could argue that maybe I am the most qualified to talk at a conference about neuro-disability and mental health.

I started to feel different at 6 years old. I realised I could see the world in a different way to my peers, I noticed that my fellow classmates could communicate in a way that I couldn’t understand. This left me with an uncomfortable exposed feeling, and even at six years old I knew that being different made me vulnerable, which led to me deciding to learn to be ‘normal’, whatever that is. I suppose in true Autism form I decided to do this without including or informing anyone how I felt or what I was doing.

I learned by watching other children, observing their body language, facial expression, hand gestures, tone of voice. And then I copied, as I grew up I become more able to be intelligent in the way I did this, I could test hypotheses, I could notice patterns, I could create flow charts and diagrams in my mind to navigate socialising. It worked well and I went along in life with no one catching on and realising I was different.  Even though that was what I was aiming for at the time, it also had some side effects. I grew up thinking I was a failure, I grew up thinking that my true self was a disgrace, something which should be hidden away.

It was when I reached 14 years old that the cracks began to appear. I started to feel quite low, and got unusually anxious over certain things. I actually brushed it off thinking it was just teenage angst, I ignored what was going on in the hope it would just go away. But when I went into year 10, the beginning of GCSEs, things went downhill rather quickly.

It reached a point where I was in the depths of depression, I felt as though I was sinking beneath an ocean desperately trying to breathe and the weight of water pushing me down. The anxiety I had was never-ending, constantly in a state of red alert. Having anxiety is a bit like when you’re home alone and suddenly you hear noise coming from somewhere else in the house, your thoughts start racing, you can hear your heart pumping faster and faster, a lump of fear and dread weighs down our ribcage and freezes your airways. For someone with Anxiety, that feeling never stops.

My appetite diminished and my ability to complete even simple tasks faded away.  I couldn’t sleep because my brain wouldn’t switch of. The only relief I could find came from self-harm. Self-harm acted as a conversion from emotional pain into manageable physical pain. All of this added upon the utter confusion and disorientation I had over how I was feeling and what was going on in my head.

The school noticed very quickly that I needed specialist help and referred me to a primary mental health nurse. I think I saw the primary nurse twice before he then decided I needed more specialist help again.

I started seeing a psychiatrist every couple of weeks in specialist CAMHS. I was very very lucky that I wasn’t put on a waiting list, to this day I am unsure why or how I managed to bypass the waiting lists. I wish I could share that secret with you, but I have no idea what it is. I was diagnosed with Depression and Anxiety to begin with. But my psychiatrist noticed that there was something underlying and pursued an Autism assessment. I was very lucky to be able to jump the waiting list for that as well, because in my local area the waiting list was something like 7 years long. I was diagnosed with Autism when I was 15 years old.

Getting a diagnosis explained to me why I had felt so different. It helped me to realise that I was not a failure, and it helped to explain why I found this world so overwhelming. Getting a diagnosis was the very first step in my journey to self-awareness. But by then mental illness had a firm grasp on my life.

I was put on a variety of medications, none of which had the desired effect, I had a course of CBT which although helped somewhat it wasn’t nearly as impactful as was required. Over a year I continued the descent, it got the point that I was having panic attacks daily in school and full on out of control meltdowns in the middle of the school corridors. I spent many evenings sat in A+E because I had self-harmed or was very suicidal. I started getting hallucinations, I heard voices which shouted derogatory comments at me, and I saw people who I believed were going to hurt me or my family. I had no control, and was detaching from reality.

It was decided that community CAMHS couldn’t support me, and I was hospitalised. I was actually in a psychiatric unit across the river from here in the Maudsley, which is actually about 5 hours from my house. I spent 3 and half months there before being transferred to a unit slightly closer to home, where I spent about 3 weeks.

Community CAMHS didn’t react in the best way to my discharge and I didn’t actually see anyone for at least 6-8 weeks after being discharged.  I relapsed over the next 6 to 8 months and became engulfed in the bitter and cold world of Anorexia Nervosa. I was almost to the point of being put back in hospital, until one day I had an epiphany style moment when I collapsed on my bathroom floor. I realised that I didn’t want to live my life jumping from hospital to hospital, I didn’t need to surrender myself to illnesses which made my life hell, I didn’t need to be in pain.

From that point onwards I pushed and fought for the things that I knew would help me, like Dialectical Behaviour Therapy, Family therapy, no medication.  I worked hard to break free from the illnesses which ruled my life. Two years on and I can stand in front of you to tell you my tale.

We all are probably aware of the downfalls associated with CAMHS. Long waiting times, lack of access to the right treatments, overuse of medications, lack of family involvement, lack of local inpatient facilities, changing staff, lack of communication between different services, poor resources and funding, etc. I have experienced pretty much all of those things, and felt the impact these issues can have on someone already suffering. Effects like distrust and inability to build therapeutic relationships with practitioners, not being able to feel safe or comfortable in the environment, disjointed support and having to repeat my story over and over, having to go hundreds of miles from my home for appropriate care, my family being treated like a problem rather than part of the solution.

Living with a disability is hard, living with mental Illness is hard, getting help should be easy.

I want to bring up at least one positive point about CAMHS and that is how hard the staff work despite not having the resources necessary to do everything that is asked of them. It’s easy to place blame on individuals when nothing seems to be going right. I know how hard community and hospital CAMHS staff have worked to look after me over the years.

The truth is some things in this world are going to be more difficult for me, I will probably always walk the tightrope above the chasm of mental illness. I do need extra help with some things in life compared to other people. My autism brain is not fully compatible with a neuro-typical world. To deny all of this would be foolish, and I would be setting myself up to be disappointed. But give me the right conditions, teach me the right things, give me the right kind of help, watch me thrive.

I am 19 years old and so far I have contributed to Welsh Government’s enquiry into children’s mental health services in Wales, which lead to an extra 7.6 million being ring fenced for the service each year, I have done 2 current affairs programmes which aired on Welsh national television, one of which won a BAFTA Award and is shortlisted for the Celtic film festival.  I have spoken at conferences, seminars and events of all shapes and sizes, I have spoken about young people’s mental health in the Welsh press on many occasions. I have co-written a report on the wellbeing of children and young people in Wales which has been widely endorsed, including by Welsh Government. I am a trustee of a Wales wide charity which supports over a 1000 people with serious mental illness and their families. Cardiff University’s National Centre for Mental health and I was commissioned to undertake a research project in my county looking into the experience of young people with Autism in secondary schools.

I recently visited my old school, where I went through a lot of the dark times over the past years. Seeing that place again, walking the corridors and speaking to the people made me realise how far I have come. I could be modest and say that it was nothing, any one could have done what I have done, but actually, I worked hard to be where I am today. I kept taking steps forward when all I wanted to do was give up. I fought for myself and for all of the other young people in Wales in similar situations, I have opened up to thousands of people about my diagnoses, I have faced stigma, misconceptions, stereotypes and ignorance. I have faced things most of my peers couldn’t even imagine, yet I have achieved more before the age 20 than some people do in a lifetime.

I am not ashamed to have Autism, I am not ashamed to have mental health problems.

My Autism makes me a driven, hard-working, passionate person. It means I have high standards and will complete any task that is asked of me at the highest quality I can possibly manage. It makes me organised, honest and authentic.

Having been through mental illness has taught me to appreciate the little things, like eating a bowl of cereal in the morning, the sound of the wind through the trees, and the ability to smile and be happy.

I no longer see my differences as a failure on my behalf, I see them as a blessing.

Don’t lose hope when you feel that life is throwing too many obstacles in your face, don’t lose hope for your sons, daughters, siblings, parents, friends, clients – when the right conditions are eventually found it will all have been worth it.

Thank you for listening”.

You can watch the video of Mair’s presentation here.

Mair has written several articles for us – “Being a woman with Autism“, “Autism and Mental Illness” and “Puberty and my Autism Diagnosis“.

Being a woman with Autism

Mair Elliott

Mair Elliott

We share Mair Elliott’s latest blog on living with Autism and Mental Illness. In this article Mair talks about what it’s like to be a woman with Autism:

“I don’t fit any stereotypes, I am not the non-verbal low functioning boy that rocks back and forth in the corner of the room. In fact the majority of people with Autism don’t fit that stereotype. I wasn’t ‘naughty’, I reached most of my developmental milestones and I can look at you in the eyes. I am not a genius or prodigy either, I am intelligent, I am academically able, I do have the ability to obsess over things until I am very knowledgeable or able in that particular field, but I am not the next Einstein or Mozart.

Autism is a spectrum condition in which someone can be anywhere along it. Each person will have a different combination of symptoms at differing levels of severity. Each person with Autism is different to the next person with Autism. You may ask why it is important for everyone to understand this fact? It is important because at the moment, despite the fact that many people in society have heard of Autism, people with Autism are affected by these stereotypes and misunderstandings which can be detrimental to a persons well-being and abilities to function. For example, employers may not hire someone who is autistic because they have prejudged this person by their diagnosis.

Another thing that many people do not realise about Autism is that girls can have it as well as boys, not only that, but Autism affects girls differently to boys. I was 15 years old when I got my diagnosis, but it was at the age of 6 that I actually realised I was different. I noticed that my peers could see and interpret a world that I couldn’t comprehend. I noticed that my world was brighter, louder, and over all more overwhelming compared to the world my peers lived in. At 6 years old I felt the intense vulnerability that came along with being different, I felt this uncomfortable feeling of being exposed. I wasn’t one for sitting back and not doing anything about it, so I decided to learn to be ‘normal’. Of course being Autistic meant that I didn’t feel the need to involve any other people in my plan or how I was feeling, not even my family.

So over the years I went through the process of watching other people communicate, how they used their hands, facial expressions, the words they used etc, practising what I had observed, and then incorporating it in my bank of diagrams and flow charts in my head to navigate socialising. It wasn’t until I fell ill and my psychiatrist noticed I was on the spectrum at the age of 15 that I was diagnosed.

Apparently, many women and girls with Autism take the same approach and from an early age ‘mask’ their difficulties. You may think ‘what an ingenious way of overcoming the difficulties Autism can cause’, which in some ways it is an incredibly effective way of coping. But it also means that many women don’t get a diagnosis until they become severely affected other problems like mental illness.

I fell ill when I was 14 years old with Depression and Anxiety, and very quickly became so unwell I developed an Eating disorder and psychosis on top of that. I had to live in a psychiatric hospital for 4 months and I have been in mental health services for over 4 years now. The main reason for my illness was that the task of maintaining my ‘mask’, trying to appear ‘normal’ to the outside world was so exhausting and mentally draining that my brain couldn’t function any longer.

Being a woman with Autism means that I am misunderstood frequently, it means that people don’t understand the difficulties I face everyday because I appear ‘normal’ on the outside, it meant that lack of knowledge and understanding of Autism in girls prevented me from getting a diagnosis at an early age and getting the right support from an early age which could have prevented mental illness. Being a woman with Autism means that when things do go wrong and I struggle people can’t comprehend why because to their knowledge I am ‘normal’ and am perfectly capable of functioning in the same way as them. Being a woman with Autism means that I am frequently told by people, both professionals and non professionals, that I couldn’t possibly be Autistic because I’m ‘not weird enough’.

The world to me feels a bit like being dumped in the middle of a vast lake and not knowing how to swim. The majority of my time is spent trying trying to keep my head above water, and avoiding the strong currents of mental illness. I find socialising terrifying, confusing and complicated. My life is spent trying to understand things that neurotypical people don’t even batter an eyelid to.

I am not ashamed to be Autistic, and I am not ashamed to be a woman. If I set my mind to something you can be assured that not only will I get it done, but it will be done at the best quality I can possibly achieve, I have high standards, and I work hard. When I get interested in something I will get so knowledgeable and able in whatever it is that I could probably get mistaken for a professional. I am reliable, I am truthful, and I am organised. Being Autistic in a society built for neurotypical people is not easy and can cause lots of problems, but being Autistic in itself can prove to be a gift.

If people simply understood that just because I appear to be ‘normal’ and able to cope doesn’t actually mean that it is true. If people were aware that autism is different for girls compared to boys then maybe less girls will have to grow up feeling like a failure and a freak. If people knew that each person with Autism is an individual then maybe some of the harmful stereotypes could be vanquished”.

Mair gave us full permission to publish this article which first appeared on her blog

You can also read Mair’s articles “Puberty and My Autism Diagnosis” and “Autism and Mental Illness: A Teenager’s Perspective”.

Innovation Centre Create High tech horse riding helmet for young boy with unique head shape.

Tommy-Lee in action

Tommy-Lee in action

The Cerebra Innovation Centre (CIC), along with the help of BSI (British Standards Institution) have taken the challenge to help a young boy with autism and a unique head shape to fulfil one of his dreams.

16 year-old Tommy-Lee from Brighton wanted to go horse riding with his friends but his unique head shape prevented him from wearing a riding helmet. Without a riding helmet he was not allowed to participate for safety reasons.

CIC’s mission is to design and develop products that will allow children to be included in activities and daily living. They focus on careful attention to the aesthetics of the product to ensure that the child not only fits in, but in some cases becomes the object of envy of the playground.

In conjunction with the MSc Industrial Design course at UWTSD, Swansea, the CIC team used high tech equipment to develop a bespoke riding helmet for Tommy Lee.  Dr Ross Head, Product Design Manager at CIC said:

“We knew that the basic principle of a helmet is quite simple but the journey to get to a safe and useable helmet was quite complex. The basic method has been to use a 3D digital scanner to scan in Tommy Lee’s head shape, the software helps to stitch the head form together so a perfectly accurate model is achieved. Then we used this data in our computer aided design software to draw the head shape. The helmet was styled around this shape, and then the cavity was removed leaving the exact shape for Tommy Lee’s head. This model was sent to a manufacturer to machine the exact shapes from the correct density of expanded polystyrene.

The team who helped Tommy-Lee's horse riding dream come true

The team who helped Tommy-Lee’s horse riding dream come true

“Upon hearing of the project and the likely cost which would have prohibited us from continuing, a very kind gentleman, Mr Gordon Coventry from a charity called Claire’s Project, offered to help fund the cost of the helmet with a generous donation of £2200.”

Gordon Coventry explained why he was moved to donate to this project: “Watching Sophie Christiansen take part in the 2012 Paralympics dressage competition was inspiring. Her face when she claimed gold was pure happiness. There was a similar look on the face of the young boy on the surfboard recently designed by CIC. I was happy to support Cerebra to enable other children to take part in activities and sport they haven’t previously been able to access”.

CIC approached the British Standards Institution (BSI) for a quote for testing the helmet to ensure it meets the same standard that a regular helmet would be subjected to. BSI kindly agreed to fund the entire cost of the testing by way of support to get Tommy Lee horse riding and tested the helmet against the BSI Kitemark™ scheme.

Maureen Sumner Smith, Managing Director UK & Ireland, BSI said: “We’re delighted to have been able to support this really worthwhile cause through our testing services. It’s been very rewarding  to work alongside CIC to help develop this bespoke riding helmet for Tommy and we’re sure that he will now get to enjoy many hours of horse riding from this.”

CIC created six helmets in total. Five of them were sent to the BSI headquarters for testing and the remaining one was finished to a beautiful standard so that, with the exception of its size, it would be indistinguishable from another riding helmet.

The team from CIC delivered the helmet to Tommy-Lee on 25th February and he couldn’t wait to put it into action. Sue Boyce of the Three Greys Riding School, Brighton, where Tommy Lee will be going horse riding said “I am very pleased that Tommy Lee will finally be able to go horse riding with his class mates, which is something he has been looking forward to for almost a year. I am sure he will love it. It is so lovely to hear that so many people have made so much effort to make this happen. We are really looking forward to it.”

Tim Schvetz, Tommy Lee’s teacher at The Cedar Centre in Brighton said, “I am absolutely thrilled that Tommy Lee is finally getting the opportunity to ride as a result of this project. He has been so keen to get on a horse and this is his chance. This will vitalise his independence. We are all so grateful to Ross and the team for their persistent hard work to get the helmet finished”.

You can watch a report on this story which was featured on ITV Wales.

Thank you to Terry Applin for allowing us to use the lovely photos below:

Autism and Mental Illness: a Teenager’s Perspective

Mair Elliott

Mair Elliott

Mair Elliot shares her experience of living with both a mental illness and Autism.

“Since 14 years old I have had doctors, psychiatrists, psychologists, therapists, nurses, occupational therapists, dieticians, support workers, counsellors… and various other professionals poking and prodding at the psychological mess in my head. I have tried more medications I than I can count on my hands, and I have taken more pills than I’d care to divulge. I have tried talking therapies upon talking therapies, some of which I know so well I could easily facilitate a course for someone in need (but I won’t).

Some people may find my recent decision to reduce the professional help I receive currently to just a phone call once a month a bit risky or odd. But the truth is I have never been able to develop strategies to help myself by myself. Falling ill during my teenage years resulted in me not only missing a heck of a lot of school, but I also missed out on the opportunity to discover how I would live my life, how I would be me, and even who I was/am. I was told how I was supposed to live my life, or I was told what was ‘healthy’. Which was fine during the time I was incapable of looking after myself.

But now I am able to look after myself, at least at the basic level. What I find frustrating is that the generic advice given to me from almost all of the people I have met, is not actually moulded in a way I can live with. Don’t get me wrong, I needed professional help to keep me alive, and I will always be grateful for the tireless efforts of the professionals, and people who had to deal with me during a very dark time in my life. But I have encountered an illusion which I believed was real for a very long time.

Let me create a metaphorical example, I am assuming that all of you have seen circus workers/clowns/or pretty much anyone create balloon animals. Well let’s say that when I was ill I was just an empty balloon. Getting professional help and advice meant that I could fill my balloon with air. It’s better than it was before, because at least now it’s inflated, but it’s just a long thin balloon. In order for it to become a balloon animal I have to twist, turn and mould the balloon until it’s an animal like shape. The only thing is, I don’t have detailed instructions, only very brief outlines.

Over the years I have been given some helpful advice on how to live my life in a healthy and happy way, but I need to take that advice and personalise it. I need to work out how that advice is going to fit into my life, and the way I live it. I need to work out which advice I have been given is going to work for me, and which advice is not going to help me.

When I discovered I was ill, I made the assumption that all I needed was a bit of therapy and possibly a bit of medication, and then I would be back to exactly who I was before I fell ill, or even a better version of who I was. I was naïve enough to believe that I would get better and be completely 100% healthy, and my life would be amazing and sparkly. I also thought that getting better was just a straight line on a graph upwards (anyone who’s been to therapy will understand the graph of recovery comment I just made).

After 10 weeks of therapy and several failed attempts of trying medication, you’d think I would have realised that this wasn’t the case, or at least when a year had gone by and I ended up living on a psychiatric unit. But the truth is I didn’t realise that I wasn’t going to make some miraculous recovery for about 3 years.

When I had this realisation I could finally takes steps towards recovery. I understood for the first time that I was going to have to put myself out there, and pretty much expect to fail continuously until I worked out ways that I could cope with life. As an obsessive perfectionist it was not a comfortable realisation, but I knew that I was going to have to work hard, and that I was going to have to accept that I was not going to do well in every step and decision I had to make. Sometimes I was going to fall down or get sucked back into old ways, and I had to be OK with having a recovery graph that looks more like a squiggle on page than a logical and tidy straight line upwards.

And this is why I don’t believe in full recovery. I can always be getting better, I can always be improving things for myself. Full recovery suggests to me that there is an end to this journey, and I don’t want that to be the case. I will always be Autistic, I might reach a point in which I am symptom free from my mental illnesses. But that won’t mean that I won’t still face challenges, in fact I know I will definitely face challenges because being Autistic sometimes in not easy.

I have gotten to the point now where I have addressed the fundamental problems I faced when I was ill, such as not eating, self-harming and self-destructive behaviour. I had the expertise of professionals to help me get to this point. But now I have to address the issues I face with life outside of my illnesses. Issues like how do I deal with Autism and maintaining professional and personal relationships, what is it that I really enjoy and how can I make it a career, what is it that helps me be happy and healthy, and most importantly what are the things which I cannot change and how can I come to accept them.

In order to work out answers to my questions, in order for me to live a long and happy life, I believe I need space now to explore. So that is why I have decided to reduce the professional help I receive down to a phone call once a month. I know when I need to ask for help, and I understand that my journey is far from easy, but for now I know this is the right decision for me.

If I have learned anything from the past few years is to never take the simple things for granted, like the love and support from family and friends, or the ability to smile and be happy”.

Mair gave us full permission to publish this article which first appeared on her blog.

You can also read Mair’s article “Puberty and My Autism Diagnosis”.

Sexuality, Autism and Young People – Families Study

The Sexuality, Autism, and Young People- Families study (SAY-Families) is a joint project between Warwick, Bangor and Glasgow Universities.  Researcher Stacey Hunter explains more about the study and how you can get involved.

“The aim of the SAY-Families study is to find out about how the parents of young people with High Functioning Autism or Asperger syndrome talk to their children about relationships and sex education. A developing sexuality is one of the key challenges that young people face as they grow up, and it is important to find out about families’ experiences of supporting their child in this sensitive area. It is hoped that by finding out parents’ views and experiences, the study will be able to inform the development of support materials for young people and their families.

To find out parents’ views and experiences, we are carrying out one-to-one interviews and have developed an online survey. If you think you might like to take part in either part of the study, more information is below. If you would like to talk to one of the research team, please also feel free to give us a call, we would be more than happy to hear from you (our contact details are also below).

The face-to-face interview

We would like to speak with the parents of young people aged between 16 and 30 years old, who also have a sibling of a similar age that is the same gender as them. This is because we would like to find out if your experiences of supporting each of your children in this area have been similar or different.

One of the research team, will speak with you on the phone to arrange a time that is suitable for you to take part in an interview. The interview can take place in your home or somewhere else that is convenient. You can also arrange for your interview to take place over the phone, if that suits you better. The interview will last roughly 45 minutes.

Online Survey

We are also looking for the parents of young people with High Functioning Autism or Aspergers aged between 16 and 30 years old to fill in an online survey. The survey can be completed by one or both parents of a young person. If you would like to take part as a couple, we ask that you fill in the survey independently and indicate that you would like your responses to be linked.
You can access the online survey here. 

Many thanks for taking the time to read about the SAY-Families study. If you would like to take part or would just like find out more about the project please do not hesitate to contact us:

Stacey Hunter
School of Psychology
Brigantia Building
Bangor University
Bangor, Gwynedd
LL57 2AS

Tel: 01248 388255
Email: Stacey.Hunter@bangor.ac.uk

Resources – December 2015

ResourcesWhere can I get a free PC?
Where to find free or low-cost computers. (Neil Hawkins)

Tax-free childcare:  ten things parents should know
Tax-Free Childcare will be available to around 2 million households to help with the cost of childcare, enabling more parents to go out to work, if they want to, to provide greater security for their families. Here’s the top ten things to know about the scheme. (HM Treasury and others)

Spending Review:  what it means for families with disabled children
Summary based on the Chancellor’s recent announcements. (Derek Sinclair, Contact a Family)

Kidtection
An agency providing nanny services by the hour for 8-16 year olds, including special needs.

Guides for children and young people

Youth Mental Health
An information hub offering young people advice and help on mental health problems including depression, anxiety and stress,  (NHS Choices).

Get your rights
Everything you need to get the most out of the NHS,  (Council for Disabled Children and National Children’s Bureau).

All about information, advice and support services
A website for young people up to the age of 25,  (Council for Disabled Children and National Children’s Bureau).

Young Person’s Guide to Personal Budgets in England
(Together for Short Lives).

Staying safe online
Top ten tips.  Leaflet designed for young people who may be about to go online with a new computer, tablet etc.,  (National Police Chiefs’ Council).

Guides for parents and carers

Babies In Mind
A free online course about ways in which parents and caregivers can influence the mind of a child from conception to infancy,  (University of Warwick).

Autism and Thanksgiving
How to cope with feasting and hubbub.  An article about the USA Thanksgiving celebrations that adapts to other situations of “holiday excitement”,  (Autism Speaks).

Upfront guide to caring
Online tool to help new carers to find the information and support they need,  (Carers UK).

How to teach a person with ASD how to cook
Article by Maureen Bennie, (Autism Awareness Centre).

Guide for parents who are formula feeding, and Building a happy baby
Two leaflets, (UNICEF).

News – November 2015

A stack of newspapersOur monthly roundup of news and legislation relevant to families who have children with neurological conditions.

Ambitious Colleges
Ambitious About Autism plan to open two more college facilities for young people with autism, from Summer 2016 in Tottenham and from September 2017 in Isleworth, London. (Ambitious College).

Epilepsy Passport
A downloadable template Epilepsy Passport has been developed by the Royal College of Paediatrics and Child Health. This is a record that families can use for emergency healthcare visits and other situations.

Autism Diagnosis Crisis
The National Autistic Society invites people to join their campaign for earlier diagnosis of autism.

Victims of Crime
A new Code of Practice for Victims of Crime has been published.  It includes various provisions for victims with disabilities, (Ministry of Justice.  Applies to England and Wales).

New NICE guidance: 
Quality standards on Challenging behaviour in learning disabilities; and Bipolar disorder, psychosis and schizophrenia in children and young people, (National Institute of Health and Care Excellence).

Immunisations
A quick guide to immunisations for the parents of premature babies, (NHS). Updated to reflect this year’s changes to the schedule.

“Supporting the Attainment of Disadvantaged Pupils”
A new report by the Dept for Education describing what has worked in selected schools around the country.

Legislation

2015 asp 11, British Sign Language (Scotland) Act 2015
Prepares for the preparation and publication of plans in relation to British Sign Language by certain national organisations.

2015 No. 1754, The Universal Credit and Miscellaneous Amendments Regulations 2015
From dates between November 2015 and April 2016, a number of adjustments to the rules for receiving Universal Credit.

2015 No. 1778 (C. 108), The Criminal Justice and Courts Act 2015 (Commencement No. 3 and Transitional Provisions) Order 2015
From 26 October, means that 17-year-olds who are interviewed or detained by police must now be treated as under-17s in some ways (such as forms of assistance, and care from the local authority).

2015 No. 1776, The National Health Service (Exemptions from Charges, Payments and Remission of Charges) (Amendment and Transitional Provision) Regulations 2015
Changes the rules for entitlement to reimbursement of NHS-related costs (optical, travel etc.). Families can still claim under the old rules for charges incurred up to 31 October 2015.

Consultation

Local area SEND consultation
About inspections of local areas’ effectiveness in identifying and meeting the needs of children and young people who are disabled and have special educational needs. There are separate versions for adults and children to respond to.
Closing date: 4 January 2016 (applies to England. Ofsted, with the Care Quality Commission).

Resources – November 2015

ResourcesOur monthly round-up of useful resources for parents of children and young people with neurological conditions.

Plain Facts
A magazine and tape for people with learning difficulties, describing research topics of interest, (Norah Fry Research Centre, Bristol).

“What good looks like in psychological services for children, young people and their families”
A new handbook published by the British Psychological Society as psychological services are under review, (links to a free download).

Grow Wild UK
Grants of £1,000 to £4,000 for community wild flower projects.  Closing date for Spring 2016 projects, 1 December 2015, (Lemos & Crane with Royal Botanic Gardens, Kew).

Book on Autism
A parent has recommended to us a new book on autism, “Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently”, by Steve Silberman. It won the 2015 Samuel Johnson prize for non-fiction and has attracted some high-profile reviews, for example The Guardian at: http://www.theguardian.com/books/2015/aug/23/neurotribes-legacy-autism-steve-silberman-book-review-saskia-baron. The reference given by our parent member was: http://bookshop.blackwell.co.uk/jsp/id/Neurotribes/9781760113636.

Top tips for getting around on public transport
A short video for young people with autism, (Ambitious About Autism, myVoice project).

Five tips that helped improve my child’s behaviour
From a mother of two boys with autism, (Autism Speaks).

Seasonal resources

Cold Weather Plan for 2015-16
This year, pregnant mothers are classed as one of the vulnerable groups.  The Plan follows NICE (National Institute of Health and Clinical Excellence) guidance and the strategy “Cutting the cost of keeping warm” by the Dept for Energy and Climate Change.  It includes a system of cold weather alerts for England.

Epilepsy and Flashing Lights
Short article about minimising any risk of a seizure triggered by festive flashing lights, electronic screens or fast-changing light and dark patterns, (Dr Fergus Rugg-Gunn, Epilepsy Society).

DIY Sensory Play
Five recipes for play materials to make at home for children with sensory difficulties (playdough, finger paints etc.), (Multi-Sensory World).  There are some small sensory presents for sale on the same website, and a blog with tips on dealing with sensory issues).

Sensory Toy Warehouse
More small sensory items.

8 presents for young children with cerebral palsy
A parent’s article about toys that her son enjoys, followed by a comments section where other parents share their successful ideas, (“Mrboosmum”).

Sensory toys
Autism West Midlands are selling a Christmas Sensebox and Glowbox.

Special needs and special occasions
Ideas for where family gatherings, etc. might be awkward. Other potentially stress-busting articles are referenced at the bottom of the webpage (Terri Mauro, About.com).