Tag Archives: Autism

The Effect of Delay in Autism Diagnosis

We’ve been asking parents to share their experiences with obtaining an Autism diagnosis for their child and the effects that delay can have.
In this article one family tell us their experiences.
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“Our daughter never slept easily. Midwives, health visitors, GPs, all offered advice and we tried everything. Our health visitor finally advised me to have one night a week in a hotel to save myself. Our daughter was apparently thriving, despite the lack of sleep, and no one had any other suggestions or reasons why.

Going into toddlerhood, cuddles were hated, eye contact wasn’t comfortable and things had to be a set way, e.g. the right plate, fork and spoon, sandwiches cut neatly into squares and on the plate in a specific pattern. However, speech was well developed, she practically taught herself to read fluently by age 2 and a half, and she could identify and add numbers ridiculously early. The nursery school were astounded and heralded her as a genius – so what that she preferred adult company and had some quirks? By this time her younger brother had arrived and he did elicit a closer relationship, rough and tumble, eye contact, etc. We didn’t worry.

In the first year of primary we noticed an increase in tics and obsessive behaviour. We mentioned autism, but the class teacher asked “why label?” and we decided to watch and wait. The teacher was particularly good at explaining why rules existed, why, in an emergency; our daughter couldn’t do her buttons up in a set order and take her time in the way she liked. Our daughter apparently thrived, becoming sociable and less obsessive. It was a classroom environment and teaching style that suited her – had it been different, we might have seen problems earlier, who knows?

As primary progressed we saw increasing abdominal pains, later diagnosed as infant migraine. We now know it was likely due to the level of stress she was carrying. Academic progress was exceptional until the junior classes, when she seemed to stall. It was put down to focusing on social interaction, later to laziness – always the argument was that she was a high achiever, she’d catch up easily when needed, she was already so far ahead it wasn’t important. Writing became a problem and we (at home, via support lines, and Google) diagnosed dysgraphia. This seemed to explain a number of ‘symptoms’ we’d seen and we dropped all thoughts of autism. We requested intervention from the school SendCo – it was by this time her final year at primary and her class teacher firmly believed her attitude was the only problem. The SendCo never observed, never assessed.

Our daughter chose a secondary school where few of her friends were going – she wanted a new start. The first year was wonderful: top classes, after school clubs, positions of responsibility. In Year 8 a number of things happened. Puberty hit and her body began changing in ways she was uncomfortable with, GCSE options had to be made and teachers were constantly pushing for ‘future plans’ to be made, peers were starting to form relationships, to talk about who they wanted to go to the Year 11 prom with and who they wanted to marry. At the same time, her brother fell ill with ME/CFS and so she lost her closest playmate and, as we now realise, social support.

The lack of sleep began to catch up – she had only ever managed 6-7 hours a night, although now older she would rest quietly and not disturb us. We contacted the school regularly with niggles – she’s exhausted today, she has a migraine today, she doesn’t understand what the teacher said, another child has been teasing her, and so on. The GP advised us to stick to waking her at 7am – on no account to ‘give in’, as this stage is just normal teenage stuff. By Year 9, grades had plummeted and after school activities diminished. Following a viral infection that seemed to be the straw that broke her, she was attending school only in the afternoons and we were receiving letters threatening court action. We asked repeatedly for a referral to the ASD team locally – the GP argued it was the school’s responsibility, they argued it should be the GP. We spoke to organisation after organisation, trying to join the dots.

We concluded she has high functioning autism, she has learnt to cover this, but has become utterly exhausted and unable to function fully. The school made the referral. Weeks later we have received a letter advising us it doesn’t give enough information to earn an assessment and we have now submitted our own evidence. We are told the wait, if granted an assessment, will be over a year – by which time she will be over 16 and will have left school, and will have to be re-referred to an adult team. In the meantime, the school are trying – but staff still ask her ‘when do you think you’ll be better?’ and her Autism Champion mentor forgets to turn up for appointments. The belief is that she is coping well – staff don’t see the fall out, or appreciate that her ‘good’ behaviour is just trying to fit in, and carries huge cost.

Interestingly, I recently bumped into some staff members from her primary school. I told them we were waiting for an ASD assessment. No one was surprised and all nodded and said it had always been pretty obvious. The huge question then is, why, oh why didn’t anyone mention it? The answer I suspect is that she was achieving educationally and behaving well, neither she nor I were making a nuisance of ourselves.

The current system encourages our children to make themselves ill, to fall seriously behind at school, to lose friendships, to take themselves to the brink before anyone helps. We have supported and protected our daughter, but in doing so we have continued the charade – allowed her to pretend at school and fall apart, unseen, at home”.

If this has struck a chord with you, we’d love to hear your story. Please get in touch with sarahj@cerebra.org.uk.

Why timely diagnosis of autism is important

Tracy Elliott, our Head of Research and Information explains why timely diagnosis of autism is important and tells us her family’s story:

Tracy and her family

Tracy and her family

“My daughter has a diagnosis of autism. The journey to diagnosis was traumatic and bewildering for my family. Aged 15 her self harming behaviour, driven by depression and anxiety, had become so severe she was a danger to herself and was admitted to a child and adolescence psychiatric unit five hours drive from our family home. She remained there for over 3 months.

Previously, unknown to us and for reasons not understood by herself, she had taught herself to copy and mimic the behaviour of her peers. From age 6 she knew she was different, she did not know why. She just felt something was very wrong and she had to hide ‘her weirdness’. Living in fear of ‘being found out’. At first this wasn’t so hard but as adolescence arrived it became impossible. She became suicidal.

The psychiatrist who saw her when she got to CAMHS had professional expertise and personal experience of autism (this isn’t always the case) and picked up on the autism, something no one else suspected as she did not fit any of the stereotypes. Her diagnosis followed within 6 months. The diagnosis explained to my daughter why she had the experiences she had, that she wasn’t ‘weird’, but had a neurological condition that meant her brain worked differently to that of most of her peers.

Exploring the diagnosis demonstrated that difference brought strengths as well as difficulties. Of course difficulties remain but they are understood, can be rationalised and coping strategies put in place. Things are no longer ‘impossible’ but ‘difficult at times’.  For my daughter her diagnosis came late. Mental health problems already entrenched and more difficult to address.

I was in a meeting recently that included senior medical professionals where a comment was made that early autism diagnosis was less of a priority to the NHS because without an effective intervention to offer there was less urgency required. While understanding the logic I was disappointed and saddened. It made me realise that people like myself and my daughter, who speaks publicly about her experiences, have to speak out. Key decision makers need to understand that even without an intervention an earlier diagnosis would have helped my daughter understand that she is not ‘weird’ but has a valuable contribution to make to her family, her friendships and society. That she is valuable not weird.

Earlier diagnosis could have limited the mental health problems that have plagued her adolescence and early adulthood. Earlier diagnosis would have made a difference to her and our family. Early diagnosis would have saved money on acute mental health services. As for intervention, well firstly it’s not all about interventions, understanding and support can go a long way. Secondly there are interventions that help, some currently being researched by Autistica, however accessing them is difficult (but that is a whole other discussion). My daughter did, eventually, receive valuable and effective intervention and it has helped. You can read my daughter’s story here.

Unacceptable delays for autism diagnosis exist across the UK. That’s for children who are already suspected of having an autistic spectrum disorder. For those children that don’t conform to stereotype, girls in particular, it’s even longer with some never getting a diagnosis. In my family’s experience diagnosis does matter, it does make a positive difference and that’s why I think timely diagnosis of autism is important”.

We want your stories about your family and getting an autism diagnosis. Do you think early diagnosis is important? What are your experiences?

Please send your stories to researchinfo@cerebra.org.uk.

Isaac’s Story – A Little Houdini!

Claire, Isaac and the whole family

Claire, Isaac and the whole family

Claire is mum to eight year-old Isaac. Here’s her story:
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“Isaac is 8 years old and the light of our lives. His big brother Josh and big sister Miriam adore him. He’s non verbal, double incontinent, and doesn’t really have any understanding of the world around him. He’s very sensory. He puts everything in his mouth, loves water and greets the world with a smile, a shriek, a clap and a licky kiss. Developmentally he’s somewhere around one to two and has been for several years now. Doctors never really found out why. They’ve called it severe global development delay, profound multiple learning disabilities and now Autism.

Isaac does not believe in sleep, or rather he sees it as an unnecessary waste of good partying time! He’s awake a couple of hours each night. Sometimes he’s awake and miserable. Sometimes he’s awake and everything is hysterically funny.

We have been on a mission since he came out of a cot 5 years ago to find a way to keep him safely in bed at night. I pride myself on being a quite ingenious, can do person who doesn’t give up easily. Sadly those traits are obviously hereditary and Isaac, or Houdini as he’s sometimes referred to, has frequently beat us!

Mummy and Daddy make DIY safe bed frame out of wood with long curtains tucked under his mattress- score one to team parent. Isaac wriggles between the gap between the curtains, escapes at 2am, knocks the bath taps on and floods the bathroom. Score one to team Isaac.

Mummy adds poppers to the curtains to try to keep Isaac in his DIY bed, 2-1 to team parent. Isaac finds a gap at the foot of the bed, escapes, and we wake to find him in the kitchen grinning at us, sat in a puddle of squash someone left out, trying to gnaw his way into a tub of custard. Team Isaac evens up the score.

Through it all Isaac giggles and claps and seems thrilled to have us join his 2am party, and we scratch our heads and go back to thinking how we can next keep him safe and get some kip.

At home at the moment our latest combination of a wood frame and a fabric cover is working. He loves enclosed spaces and seems to need to block out the visual stimulation of his room to be able to settle,  but I know soon he will beat us again, it’s not a long term solution. He’s made very little developmental progress in the last 5 years and we’ve accepted one day we will be caring for a non verbal, incontinent, adult toddler with severe learning disabilities, no real understanding of the world around him – five foot something of pure mischief.  As he gets stronger and bigger it’s essential we keep him safe in his bed at night.

We get by with a sense of humour, supportive friends  and a lot of coffee! Going away on holiday however is a whole other ball game. The last time we attempted to stay in a hotel we had the management knocking on the door frequently throughout the night telling us they’d had complaints about a child running about and shrieking and clapping. That was pretty hard.

Today a letter came through the post though and the world became a better place! Our Cerebra grant for a safety sleeper had been confirmed. This amazing piece of kit fits into a small suitcase to go away with us, and folds out into a fully enclosed and very cool looking safe sleeping tent . It can go everywhere with us and when team Isaac next defeats our DIY home solution, instead of weeping over triple strength coffee and eating a whole packet of Jaffa cakes, we will simply put the safety sleeper up in his room as his permanent bed and know he’ll be safe. This is our forever solution. Everywhere we go, it will pack up into its case and come with us. And that will restrict the bathroom floods and squash/ custard spillages and all the other mischief he gets up to, to just the daylight hours!

Not in a million years could a family like ours afford the four figure sum for this incredible product. Without Cerebra’s grant, while we would single-handedly keep the world wide coffee industry afloat, we would be facing a pretty bleak and sleep deprived future and we have got pretty close to just giving up on attempting to take the children away on holiday and chasing Isaac about all night.  I will be watching the post, our game changing life changing safety sleeper should be delivered next week and we have booked to go away the week after for a few days to try it out. So from the bottom of our hearts, thank you Cerebra, for giving us a reason to hold onto our sanity and dare to hope that this is a big part of our happily ever after”.

Uniquely Human: a different way of seeing autism

uniquely humanUniquely Human: a different way of seeing autism

by Dr Barry M Prizant
ISBN 9780285643338
£20.00

We all have different coping strategies. Think about the behaviours associated with autism? Hand flapping, spinning, rocking, a restricted range of interests. A lot of current thinking aims to eliminate these behaviours. But what if they are strategies to cope, to adapt and to communicate your emotions? What if the current thinking is just treating an autistic person as a problem to be solved rather than an individual to be understood? Dr Prizant draws on his four decades of experience from working in the field of autism to present his thoughts and suggestions for helping those with autism to live more fulfilling lives and to help their relatives find a greater understanding.

We now have this book available to borrow in our library, along with a wide range of other books on autism and other special needs. Why not take a look at our book list?

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 Cerebra held its 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’.

Cerebra’s aim is to ensure 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 the involvement of 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 entitled ‘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:

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

This session focussed 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 and perspective 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 entitled ‘Working to improve mental health and well-being’ comprised of talks given by:

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.

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”.