Tag Archives: Autism

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).

Puberty and My Autism Diagnosis

Mair Elliott

Mair Elliott

Mair Elliott, now aged 18, shares her experience of being diagnosed with Autism as a teenager.

“Most of us will know the time, the time when we suddenly got really grumpy, our bodies started sprouting hair from random places, we started to spend a lot more time ‘hanging out’ with our friends. The time when everyone suddenly became obsessed with relationships and sex, and when everyone wanted to try the latest ‘must haves’. People started to wear different clothing and tried different styles . Our parents drove us up the wall, and school always set too much homework. You guessed it; the teenage years.

Many of us will remember those precious few years as being full of fun, experimenting, heartbreak, excitement and a little confusion. No one has smooth sailing through puberty, all of us were desperate to ‘find ourselves’. Most will find their paths, and learn to sail the rough seas of growing up. But what happens when your whole world is turned upside down by a few simple words, slap bang in the middle of those unstable years?

I was 14 when something started going wrong, I didn’t have a clue what it was. Low moods, an inability to concentrate, lack of interest in things. I brushed it off as ‘teenage angst’ after all that’s what’s supposed to happen isn’t it? But over a couple of months things got worse and I felt low all of the time, I wasn’t sad, I wasn’t anything really, just empty. And then the worrying and stressing kicked in. The fear and nervous energy began to sing its song in my head. I would be reduced to a quivering ball of tears and breathlessness, something which I now know as a panic attack. I had no control over what my head was doing, but it was certainly not doing as it was supposed to. I started hurting myself, not something which came as a decision but more as an instinct when I couldn’t deal with how I felt. I could no longer face eating, and slowly restricted what I put in my mouth, which again was not a conscious decision, it wasn’t something I had control over.

Luckily, a teacher in school had noticed, she referred me to school nurse, who promptly referred me to mental health services. I met with a psychiatrist, something which could be a blog post in itself! I was never good at speaking about how I felt, because I never actually was able to understand how I felt. But after a couple of sessions the psychiatrist said something which would change my life forever.

“I think you might be on the Autism spectrum.”

I was given a diagnosis of Autism at 15 years old, I was also diagnosed with Depression and Anxiety, just to complete the set.

I had always known I was different, but at a young age I took matters into my own hands and decided to learn how to be ‘normal’. I would watch other children and copy what they did, mimic their body language and facial expressions, and I learn what words they used. And this became my obsession, people were my obsession. So no, it probably wasn’t noticeable that I had autism to the untrained eye. All the stereotypical things that people think of when it comes to autism, I just didn’t do. For example, I learned how to make eye contact, I hated it but I did it because that’s what everyone else did, my obsession was people, so I didn’t have any obviously unusual obsessions, I could speak and communicate well because I had taught myself how.

Being given a diagnosis during the years in which I was supposed to be figuring out who I was, blew everything into confusion. I started questioning the everyday things, whether or not they were ‘autistic’ things or just me. Questions like, ‘what does this mean for the future?’ And, ‘Am I going to be able to live a ‘normal’ life?’ started cropping up. My mental illness had declined to the point where I required hospitalisation. All the while I was desperate to work out who I was.

I quickly started to believe that I was destined to be the ‘crazy’ one. The ‘crazy cat lady’ or the ‘mad hatter’. Because all of these things, the mental illness, the autism discovery completely blew my world into pieces. And I was subjecting myself to stigma which the rest of the word was waving in my face. I thought that I would be ill, and unsuccessful because apparently that Is who I’d become during those years. Whilst my friends were out experimenting, trying new things, developing their personalities and becoming people, I was in and out of hospital, meeting with doctors and nurses, taking medication, having meltdowns in the school corridors and needing stitches every couple of days.

I am now 18, I am a lot better, and doing well. I believe that I have managed to reach the other side of the terrible teenage years. My path through was completely different to my peers, who have all recently embarked on their new journeys in University. But I think the most important thing I think that I have recently discovered, is that I don’t have to be the ‘crazy’ one, I can be who I want to be. I have autism, and that’s ok. I have depression, and that’s ok. I have anxiety, and that’s ok. In the past I have thought that those things will define me for the rest of my life, that I would always be known by my autistic traits. But now I know that although those things are part of me, they cannot and will not define who I am as a person. They do not have that kind of power over me, and I won’t ever give them that kind of power ever again. I can search for who I am , and I can become something which does not allow my diagnoses to set any limits on my abilities. And of course Autism comes with its advantages, for example once I find something I like I have the drive and willpower of a police dog on the scent of explosives to pursue that topic of interest. I can see the world in a completely different way to most other people, and I think my view of the world is a beautiful one.”

Mair gave us full permission to publish this article which originally appeared as guest blog on the website aspertypical 

Safety gate success for the Innovation Centre

Cole in the car with his safety gate

Cole in the car with his safety gate

The Cerebra Innovation Centre were recently contacted by Nicola, the mother of four year-old Cole.

Young Cole  suffers from Tuberous Sclerosis – a rare genetic condition that can cause benign tumours to grow all over his body, as well as Epilepsy and Autism. He also has behaviour and communication difficulties.

Cole has a baby sister, 9 month old Myla whom he loves her dearly, but his sensory issues mean that he likes to hear her cry, often meaning that he can get overly excited and lashes out at her.

Mum Nicola told us: “This is bad enough in the house as Myla can at least be kept out of Cole’s way but in the car, even with a harness, he still managed to get to her. I would only take the kids out together to places that were close by  and where I could distract Cole with food. Even then driving was stressful and I often had to pull over to stop him getting to her. It was dangerous because I was constantly worrying about what he was doing and so didn’t have full concentration on the road.”

After trying various different solutions from harnesses to dog guards with little success, Nicola contacted the Cerebra Innovation Centre to see if the team could develop a new solution to keep everyone safe whilst out and about in the car. The team came up with the safety gate.

“The Safety Gate is fantastic! It looks great and even looks like it is part of the car. It has a window and little holes so Myla and Cole can still see each other. Cole loves it – I think it makes him feel secure as he likes small spaces but the best thing is that I can drive without worrying because I know my daughter is safe. We can now go further afield in the car together and it has made everyday life so much easier. I can’t thank the Innovation Centre team enough. It has changed our lives.”

The Cerebra Innovation Centre are always eager to hear from parents with their ideas for new products and that’s where you come in! If you have an idea for a product that you can’t find anywhere else or need a product adapted to meet your child’s needs, then get in touch! You can contact the team at cic@cerebra.org.uk or 01792 483688.

Volunteers Needed for Research Study

EU-AIMS study

EU-AIMS study

European Autism Interventions – A Multicentre Study for Developing New Medications (EU-AIMS) are looking for volunteers to take part in exciting new research.

Their latest study will be looking at brain development and behaviour in both the general population and in people with autism spectrum disorder.

They are looking for children, young people and adults aged 12 – 30 years old to take part in their research.

The study will involve online questionnaires as well as two half-day visits to the Institute of Psychiatry in London. The visits would include in-person tasks and tests , a brain scan and a blood or saliva sample.

If you would like any further information, please contact eu-aims@kcl.ac.uk or 02078480844.

You can also visit their website here: www.eu-aims.eu