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Charlie and Karen

“It’s too late for my Charlie, but we can tackle mental health in autism”

When Autistica’s report on early death in autism was mentioned on the radio in March this year, Karen – Charlie’s mother couldn’t believe what she was hearing. She thought her daughter,  her family, had been terribly unlucky, but what she was hearing told her that suicide is happening to families across the UK, with autism being the common link. She quickly got in touch with us, desperate to share her story, desperate that Autistica continues to draw attention and take action over suicide in autism. This is her story.

Charlie and rabbitCharlie was a very quiet, good little girl, but as she grew up and approached double figures I noticed she became quite withdrawn, and wasn’t at all happy. She felt like an outsider, but desperately wanted to be like everyone else. She started to self harm. Really, truly extreme self harm. I’d do what I could to hide sharp things but she would find anything that she could cut herself with. It was awful to see her so determinedly self-destruct and be so powerless to stop it.

We tried to help her ourselves at first, but knew she needed specialist help. She spent periods in psychiatric units – which was more aimed at containment rather than treatment and the doctors just weren’t able to help her in any way. I can see now, that’s because they were treating her mental health and ignoring her autism – so no wonder nothing worked.

There was one doctor who was brilliant and managed to get through to her. He saw immediately that her autism was stopping her from getting the help that she needed. He understood, but he had nothing to offer her. Over many years doctors offered completely inappropriate treatments – group talking therapy for example. For someone who cannot express their feelings, and totally lacks emotional understanding or social skills that was unbearable, and we knew it wouldn’t work.

Charlie & Karen - ChristmasDespite these battles and dark moments Charlie kept her (very literal!) sense of humour. She loved music. Music spoke to her in a way that people didn’t. Likewise animals – they loved unconditionally and didn’t mind her conforming to social norms and holding a conversation. These two passions led her to become an accomplished drummer and get a BTec in animal care and management. We were so proud. But the depression and anxiety never went away.

At that time she told me that she had been thinking about ending her life since she was thirteen. It was heartbreaking, but came as no surprise, we knew how unhappy she was, but no matter how much love and support and attention we gave, it didn’t help. She was at the centre of our family’s world, her grandparent’s, her sister’s, mine. We all rallied so hard for so long.

But in January this year, aged just 25, she did end her life. She saw no way out other than to kill herself.  We were left devastated and completely empty.

She was the most loyal and loving sister, daughter and granddaughter. Before taking her life, she wrote a note to all of her closest family. There was nothing selfish about Charlie, and she would never have wanted to hurt or upset anyone. But obviously we were distraught.

Until I read in Autistica’s report about early death in autism. I thought Charlie’s experience was just a tragic one-off. But now I know there are thousands of young men and women going through the same battles that she did. We are failing all of them.

Charlie and catAs a family we have all agreed that we must not let our deep grief get in the way of helping others like Charlie. Her death must not be in vain. That’s why we want to do all we can to help Autistica’s research into mental health in autism. We need to help families now before it’s too late.

Please join me in this vision of a future where autistic people have the treatments and services that they need to live their life to the full and be happy. We all deserve that.

 


 

You can listen to Ruby Wax telling Charlie’s story on Radio 4, as part of our #LittleLifesaver appeal this Sunday – 24 July at 7:55 am.

Rubber ring littlelifesaver

Lifesaver campaign update

In March, Autistica launched a report highlighting that autistic people are dying decades earlier than the rest of the population. Despite this shocking finding, there is very little research going on anywhere in the world into how to treat epilepsy, depression and the other major killers of autistic people.

Since then, we’ve received letters and calls from parents all over the country whose autistic children’s lives are at daily risk. Many have uncontrolled epilepsy or are going through crippling depression and anxiety with virtually no autism-appropriate support. You can hear about  Josh’s  Aspergers, OCD and anorexia, or hear about 7 year old Samuel’s extreme anxiety that means every trip out of the house is a new, scary, stressful experience.

We have had some great progress since launching the report and our Lifesaver campaign to raise awareness of the issues and fund life saving life changing research. We have started to work with other epilepsy and mental health charities along with researchers in the UK and globally to scope out the research needed that will save lives and give people the tools that will give them a better chance at happiness. Our Lifesaver Fund will involve world experts in setting the right course for understanding the clinical causes of depression and suicidal thoughts in autism. We are currently in discussions with two universities regarding projects to help us understand family experiences in those with autism and epilepsy.

The support we have received has got us off to an amazing start and we are well on our way to raising £500,000 through indvidual, corporate and major gifts, so thank you to all who have contributed so far..

But this is just the beginning and we need to do more. 

Our Lifesaver Appeal will continue raising life saving funds with a Radio 4 Appeal on Sunday 24th July – presented by mental health campaigner Ruby Wax. Listen out!

Ruby Wax - Autistica #LittleLifesaver - mental health

We’ll be continuing the campaign online with the hashtag #LittleLifesaver to raise awareness and funds for mental health in autism, so join us in the discussion. We will post updates on the progress of the campaign here, and you can register for updates below.

Let’s work together to give autistic people the longer, healthier happier lives that they deserve.

 

Samuel with his Mum Katie
Samuel with his Mum Katie

 

Nicky and Josh

Aspergers is a part of Josh. His mental health problems we desperately want to take away.

Nicky, Josh’s Mum, shares a diary entry which she hopes will go some way in explaining the impact autism-related mental health problems have had on her son and her family:

Before you read my diary entry I’d like you to know a bit about my son Josh.  He is 23, quite tall and skinny with chocolate button eyes and a mass of blond hair which grows into ringlets.  He is interested in so many things, history is a favourite, he loves kids and animals, but his absolute passion is gaming and he’s the number 1 fan of Nintendo.  He would love a career in gaming and he’d be brilliant as he can be totally focused and dedicated.  He’s got such a great sense of humour but the one thing I admire about him most is his natural and rather unusual empathy of others.  There is definitely something about Josh that means he is loved by everyone.

Josh also has Aspergers Syndrome which was diagnosed when he was 5.  He doesn’t mind it in the slightest and says it’s part of who he is.  When he was 10, he developed OCD which has become increasingly worse.  He hates the OCD.  I hate it too.


 

12th October 2015 – On the train home from a hospital appointment.

Watching you and listening to your words in the clinic as you said you’re useless for not making progress, that you deserve to feel depressed and that we’d be better off without you made me feel almost as though I was dreaming.  I could feel my heart palpitating and I felt dizzy as I tried to process your words without crying.  I saw your eyes glistening and still I didn’t cry, because, to be honest, I think I’m beyond crying now – well, sometimes.

It’s so very painful Josh knowing you feel you deserve to be unhappy just because you haven’t conquered your OCD.  There are plenty of people to blame, not least the system we’re trapped in, but you blame yourself.  My beautiful, intelligent and funny son, whom everyone adores, blames himself.  Oh Josh, it’s so hard to deal with that.


 

As a Mum navigating the maze of mental health services, I have learnt a lot about myself, things I didn’t really want to learn, like how much patience I have, how tenacious I can be, how angry I can get and what “end of your tether” really means.

When Josh was 10, he was diagnosed with an eating disorder and OCD.  Before my very eyes, my son had deliberately been reducing his calorie intake to get back to a weight he’d been when we were living in Kent 6 months before, when he was happy. He’d found the transition from a nurturing primary school to a big secondary school too much to cope with. I now know that’s so common in autism, and like many parents I was forced to home educate him.

He had become dangerously underweight, in fact not even on the scale.  I just couldn’t get my head around putting my 10 year old son on anti-depressants and the guilt I felt about not noticing what was happening to his little body was overwhelming. Before we relented to the medication, we tried for 3 weeks to get him to start eating properly and to change his mind-set.  I did everything I could think of, from begging him on my knees to talking about the music he might like at his funeral – I was absolutely determined to snap him out of it.  But I learnt that where autism and OCD is concerned, there is no snapping out of it.  So began a journey of medication and therapy – it took him 2 years to recover.  We also began a journey of CAMHS therapy, solution focused clinic, counselling, CBT, adult mental health PCN sessions, psychiatric counselling CBT sessions, specialist ASD/OCD CBT – hours and hours of it, 13 years in total.

And here we are today in desperate need of help still – all I can say is that the years of therapy have done absolutely nothing. Mainly because the therapy is  a limited number of sessions only, there is no continuity in transition from child to adult services. There is absolutely no agenda for treating mental health problems with Aspergers. Everything Josh has been given I’ve had to fight tooth and nail for. If I gave up every time the answer was “well that funding is not for autistic people” Josh would have nothing.

I don’t know how much longer Josh can cope in this terrible state, or how we can cope as a family. He should be able to work, have hobbies, have friends, but instead he is stuck at home with no quality of life whatsoever.

All I can say is I am so pleased that Autistica is raising awareness of mental health problems in autism, finding this out gives us hope. I desperately need to know that in future there will be better continuity of care, funding and autism training. And most of all I need to know that there will be treatments that will work. 13 years of trial and error is not acceptable.  Watching 13 years of your son’s life lost like this is heartbreaking.

Autism: Top Ten Research Priorities logo

Top ten priorities for autism research launches today

Today (26 May) we will launch the results of our year-long consultation on autism research priorities in partnership with the National Autistic Society and many other autism charities.

The process, known as a James Lind Alliance Priority Setting Partnership, is well-validated and involved autistic adults, parents and professionals working together to decide the top 10 questions for autism research – further details can be found here: www.autistica.org.uk/top10.

The results will be announced on Twitter (@AutisticaUK) and Facebook (@Autistica Charity) from 10am in reverse order, with a question being released every half hour using the hashtag #autismpriorities. The full top 10 will be shared at 3pm.

Please share the results with your networks and join the conversation!

We will let you know our next steps here once the full list is announced this afternoon.

Jeff Challenge Events Autistica Fundraiser Autism Research

What keeps Jeff jogging

Running for charity can be a hugely rewarding experience. Whether you’re a seasoned runner or whether it’s a new and daunting challenge, running to raise funds for a cause close to your heart is a big motivator.

Every year Autistica gets places for organised running events around the country, but also supports runners that wish to go solo with their own challenges.  Our running star Jeff came to us as a parent who wanted to take part in a marathon for Autistica, he has since become not only our top ever fundraiser, but also now sits on our Board of Trustees.

We ask Jeff for his top tips to running over twenty miles and raising over £20,000!

Saul, Jeff

Jeff, when did you start running?
I started at the end of January 2011 to start training for my first 10k race (for Autistica) in May 2011.

So, how many runs have you now completed for Autistica?
I’ve now done a 10k, 2 half marathons, and 4 marathons.

What is your motivation?
I run for my elder son who was diagnosed with autism when he was about 2.5 years old. I think we need to better understand autism first and foremost to enable us to help those dealing with it and society in general to change appropriately, and Autistica strives to do exactly that.

 You hold Autistica’s record for most funds raised from a single challenge event – £31,500 in the 2016 Boston Marathon! What are your top 5 tips for fundraising?
I think the main thing that’s helped is that I’ve been lucky to know a big group of very generous people, and to work at a company that very much encourages a culture of charitable giving (as well as matching donations!), but aside from that:

  • Tell people your story . Give your reasons for raising money for this particular charity. No one is inspired to give if you just send them the generic write-up from the fundraising site.
  • Share the journey. Make people feel a part of your quest. This will not only make people more likely to donate, but if they’re with you in spirit on the day, it’ll help drive you on in the race.
  • Train hard. My first race was a novelty where people doubted I could complete it. Now that it’s no longer about that, I think people are only drawn to it because I push myself as hard as I can.
  • Cast a wide net. You might feel embarrassed when sending out a fundraising e-mail so you might only include people you know really well, as if you’re asking people to give you money. You’re not. You’re asking them to give money to a very worthy charity, and you’re just providing the impetus. Therefore just send it out broadly. You never know who might have a connection to your cause. Besides, the worst that could happen is someone doesn’t donate, and perhaps asks you to leave them off future fundraising emails.
  • Remind people. I send out an initial e-mail when I set up my page, then remind people with a month to go, and then again just before the race. Many people do want to donate but don’t get around to it, so a little reminder goes a long way.

Thanks for the tips Jeff! Boston was your biggest fundriaser but what has been your favourite run to date and why?
It’s tough to compare, but I think it would have to be the London marathon in 2012. It was my first marathon, and the crowds and atmosphere in general were absolutely amazing. I went in with a fairly aggressive goal, and I was able to come in just ahead of it. The run over Tower Bridge and the turn onto the Mall in front of Buckingham Palace are still very fresh in my memory.

That sounds like an amazing experience. What is it you enjoy most about running?
Initially I got hooked on being able to improve each and every time I set out. I was in pretty bad shape when I started, so it was almost guaranteed that I would be able to go a bit farther or a bit faster than previous runs. Now that’s no longer the case, but occasionally I still surprise myself, and that’s one thing I really enjoy: seeing what your body is capable of that maybe you didn’t expect. It’s also a huge outlet for stress and a time to let my mind wander. I mostly realise that when I can’t run for a little while due to injury!

It’s been said that long-distance running is 10% physical and 90% mental. How do you prepare psychologically for a long run?
These days my long runs involve quite a bit of running at marathon pace, so I often feel a bit nervous ahead of them. But when I head out for a long run without worrying about pace, I try to focus on having 3 hours (or more) of just being outside and enjoying what I love about running!

That sounds like a great way to focus your mind. How long do you train in the build up to a Marathon? What other activities do you do alongside running to get you marathon-fit?
For the last few marathons I’ve done, I’ve followed a 20-week training plan, but have also done a 16-week plan. With any training plan you need to do a bit of “pre-training” to make sure you’re in good enough shape to withstand the training load even in the early weeks. I don’t cross-train during training unless I’m injured and therefore can’t run, but I make sure I stretch, do some running-specific body-weight strength and core stability training, and some mobility exercises.

What is your fastest Marathon time?
3:07:13 (but who’s counting!)

What food do you eat pre- and post-run that keeps your energy levels up?
My pre-run breakfast is porridge with a bit of maple syrup (you can take the boy out of Canada…). Post-run I have a SiS Rego shake, but before I was so specific about it I used to just have a couple of pieces of toast with peanut butter, and maybe a banana.

What’s next, Jeff?
I definitely want to run London again, but unfortunately in Boston I didn’t achieve my goal of a good-for-age time. So it looks like a spring marathon in 2017 to try to qualify for London in 2018. As always, I’ll be raising money for Autistica and running in an Autistica vest, wherever it is.

 

If you’re interested in running for Autistica like Jeff, you can find all our fantastic events here. Have a hankering to do your own thing instead? Let us know, we’ll be keen to support you all the way from the gym to the finish line. 

Contact Charlotte: charlotte.bignell@autistica.org.uk or on 0203 857 4343

Female researcher looking through microscope in a laboratory.

Folate consumption claim

In the news today is a claim that excessive consumption of folate by pregnant women could lead to a higher risk of the future child developing autism. You can read the Independent article on the news here.

We do not want this news to alarm readers, so have asked our Research Director, Dr James Cusack to comment on the science behind the claim:

“Although this finding is striking, it is vital to remember that this research is at a very early stage.  In fact, this information has simply come from a single poster at a conference.  It is far too early to say whether this finding is correct and so families should not be overly concerned.

It is of course important to understand whether there are any environmental factors which increase the likelihood of autism.  As the authors of this poster themselves suggest, to actually understand whether there is a link between increased folate and autism, we need far more data from other cohorts, more in-depth peer review, and further data analysis.

To put this result in context, we have had an array of proposed environmental factors associated with autism over the years.  For example, early research suggested anti-depressant use in mothers increased the likelihood of autism, but careful statistical analyses, and control of confounding factors, disproved this theory.

It’s exceptionally important that when we talk about autism research findings, we consider the evidence carefully and proportionately.  Autism researchers should be well aware of this, following the false link between MMR and autism and the huge societal issues this has led to.”

 

The British Pregnancy Advisory Service have said:

“Folic acid is proven to dramatically reduce the risk of neural tube defects (NTDs) such as spina bifida, which causes life-long disability, and anencephaly, a fatal condition where the baby’s brain and skull do not form properly”.

“We would absolutely advise women who are planning pregnancies to continue to take folic acid supplements, with the current recommendation to continue with these up until the 12th week of pregnancy.”

 

If you have any concerns about research claims such as this one, please contact:

info@autistica.org.uk

Samuel London Stock Exchange

Young boy with autism opens the Market at the London Stock Exchange

World Autism Awareness Week.

6 April 2016
Tech entrepreneur and founder of autism research charity Autistica Dame Stephanie Shirley joined Samuel, a 7 year old autistic boy today, to open the stock market and ring the bell for autism research. He is the youngest person to ever open the market. Samuel was diagnosed with autism aged 3. He is a happy and bright boy but his communication difficulties mean that everyday life is extremely challenging, and he will require a lifetime of support. It is hoped that this ceremony for World Autism Awareness Week can draw attention to the need for increased understanding of this complex condition from diagnosis right through to old age.

Samuel is typical of thousands of children who have autism: he started life as a happy toddler who reached all major developmental milestones, but aged 2, his behaviour changed and the little speech and skills that he had began to disappear. His parents Katie and William fought hard for an early diagnosis, and feel strongly that more research is needed to give families the help that they need as early as possible.

Samuel’s mother Katie said:
“The earlier parents get a diagnosis, the sooner they can start educating themselves, seeking support, and adapting the ways that they care for their child with autism.”

“Early diagnosis and support is just one part of why I think Autistica’s research is so important. People forget that autism is a lifelong condition and I worry about the future for Samuel. I worry about when he starts to be aware that he is different, and I worry about when we are no longer around to support him.”

Katie was keen for Samuel to take part but explains that for him, it was a challenging experience:
“We worked hard with Samuel to prepare him for today so that he knew what to expect. He struggles with strange people and places, bright lights and music, all of which are a big part of the ceremony but the Stock Exchange kindly made some allowances to make him feel comfortable.”

“We can never predict how he will react in new situations. It is crucial though that we support him to do things like this that he can be proud of, and important that people see the real challenges that autism can present.”

Jon Spiers, Chief Executive of Autistica, the charity that organised the opening with the LSE, said:
“We were thrilled to be given this opportunity to highlight the need for autism research, which remains one of the most underfunded areas of medical research. We are very grateful to Samuel and his parents for representing Autistica at this prestigious and iconic ceremony.”

Dame Stephanie Shirley, who founded Autistica in 2004, had a son with autism and feels passionately that research is key in providing better support for those with the condition:
“I made my fortune in business, and it is an honour to be back here today so many years later to talk about the subject that is dearest to my heart. I have given the majority of my wealth away to fund autism projects. Although we have made some progress, there is still so much we don’t know about autism and how to best support those like my late son Giles. We need the government and funders to realise that research is key to really make a long and lasting difference to people’s lives.”

Diane Côté, Chief Risk Officer, London Stock Exchange Group, said:
“We were delighted to welcome Autistica, to London Stock Exchange to open the London market and raise awareness of autism during World Autism Awareness Week. Autistica is an inspirational charity, campaigning for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions, making a real difference to the lives of those living with autism.”

young autistic girl

We need to do more to improve early diagnosis in autism

New research finds that the age of diagnosis for autism has not changed in ten years

Autistica-funded research at Newcastle University has found that the age at which children are diagnosed with autism has not decreased in a decade and as a result many are not getting access to specialist services early enough. Their study published today shows that the age of diagnosis still averages 4 and a half years (55 months).

In the biggest study undertaken in the UK of children with autism, the team analysed data between 2004 and 2014. Over this period, they found that even those classed as being diagnosed early – under the age of three – were identified at age 30 months, the same as a decade before.

You can read the full paper here in the Journal of Autism and Developmental Disorders.

Early support needed

Lead author of the study Dr Jeremy Parr, said :

“There’s a growing body of evidence showing that early intervention can improve social and communication skills in children with autism spectrum disorder.

“Many children receive a diagnosis later than they could have done, this means that they and their parents have to struggle on longer than necessary without suitable support or understanding of their child’s difficulties.

“We need to improve awareness of the signs of autism spectrum disorder in very young children. We need health visitors and GPs to have the training and support to help them identify young children with ASD.

“Some children with autism are very difficult to diagnose as their difficulties are less obvious, and they won’t be picked up until they’re five or older. But for most children there are early signs of autism that could be picked up in the second or third year of life, if not before – signs such as limited social interaction, speech delay or loss of speech.”

Autism database

The study, the largest of its kind involving 2,134 children and families, was made possible thanks to ASD-UK a database funded by Autistica which gives accurate data about children with autism and provides families with the opportunity to take part in research studies.

Boys, who as expected make up 82.7% of the database, were identified as getting an earlier diagnosis than girls and those with Asperger syndrome were diagnosed later. The team also found that children who were non-verbal or whose language repertoire included only single words or echoing sounds were diagnosed earlier.

Dr Parr and his team work as part of Newcastle Academic Health Partners, a collaboration involving NHS trusts and Newcastle University. This partnership ensures families benefit sooner from new treatments, diagnostics and prevention strategies.

Carol Povey, Director of the National Autistic Society’s Centre for Autism, said:

“This important study shows that professionals still aren’t picking up the signs of autism early enough. An early diagnosis can be life-changing for families. It can help them understand their son or daughter, give them essential information about what might help and unlock professional advice and support.”

“Autistica will continue to invest in research to help identify the early signs of autism with a view to ensuring accurate and timely diagnosis.  We are also committed to funding innovative interventions to support families during and after diagnosis” James Cusack, Research Director, Autistica.

 

You can get involved in autism research yourself or take part as a family member. Find out more and join the database here:

GNR-featured-image-answers

Personal tragedies, public crisis

On Friday 18th March, Autistica launched a report: Personal tragedies, public crisis, highlighting new data on tragic levels of early death in autism. The report shows how people with autism are dying 16 years before their time, with the leading causes of early death being epilepsy and suicide. Life expectancy in autism has been very much overlooked before, and there is virtually no research in this area, but we aim to change that.

Before we launched this report we understood that this news would be shocking for many people, so made sure that whilst putting the report together, we worked very closely with autistic individuals, family members, academics, doctors, professional bodies and fellow charities to ensure that we were communicating these statistics and recommendations for action as sensitively as possible. We held a press conference to ensure that the media got the true facts, and stressed with them the need to present the news responsibly with families and individuals affected in mind.

As a research organisation we hope that this new data, although saddening, brings attention to the issues, and importantly encourages people to take action.

You can read the full report here.

Autism East Midlands have also kindly produced an easy read version of the report.

For those that have concerns, there is an easy read guide for where to go for help.

 

If you want to take action as a result of hearing about the problem of early deaths in autism, there are five ways you can help now:

1. Sign the petition

Tell David Cameron it’s #timeforanswers and that we must undertake a National Autism Mortality Review. The data that we highlight in our report is from a large Swedish study so in order to get funders, government and services to really take action in the UK, we need to understand the problem here. If we can assess clinical and mental health services and understand best practice, recommendations can then be formed for reducing early death in autism. You can sign the petition here

2. Email or write to your MP

There are practical steps which we know should be taken now to extend the lives of autistic people now. Tell your MP to lobby for more research funding, clearer identification of autistic people, better health checks, and an autism-friendly NHS. Ensure you MP ensures action is taken following the unacceptable findings from the Mazars report which investigated the deaths of people with a learning disability or mental health problems and found clear evidence of systemic failures. You can get in touch with your MP here.

3. Submit evidence to the Westminster Commission

The Westminster Commission on Autism are conducting an inquiry in to the access to quality of healthcare for autistic people. Let them know how improvements can be made by making a submission here.

4. Get involved in research

To further understand why autistic people are dying early, we need research studies to track outcomes of families and autistic people. We currently fund two research databases at Newcastle University to enable people to take part in research, and to further the progress of families and autistic adults. If you have a child with autism you can sign up to this database here. If you’re an autistic adult you can sign up to this database here.

5. Help us raise money to increase research funding into the major drivers of early death

We aim to raise £10 million towards tackling this mortality crisis in autism. We want to understand the views of the autism community, the link between autism and epilepsy, the factors which lead to suicide, poorer physical health, and crucially how we can lower the risk of death and improve quality of life for autistic people. We need your help to raise that money. Find out more here.


If you are affected by the issues highlighted in this report, these organisations offer advice and support:

Samaritans helpline: 116 123 (freephone) or jo@samaritans.org www.samaritans.org

Mind helpline: 0300 123 3393 or info@mind.org.uk or text 86463 www.mind.org.uk

The National Autistic Society: 0808 800 4104 www.autism.org.uk

SUDEP (Sudden unexpected death in epilepsy)

Action: 01235 772850 www.sudep.org

Epilepsy Action: 0808 800 5050 or helpline@epilepsy.org.uk www.epilepsy.org.uk

Epilepsy Society: 01494 601400 www.epilepsysociety.org.uk

Cruse Bereavement Care: 0844 477 9400 www.cruse.org.uk

Luke Jackson Sex Drugs and Aspger's Syndrome Autistica Book Review Autism Research

Book Review: Sex, Drugs and Asperger’s Syndrome (ASD), A User Guide to Adulthood by Luke Jackson

Sex, Drugs and Asperger’s Syndrome (ASD), A User Guide to Adulthood by Luke Jackson – Jessica Kingsley Publishers, 2016

Adolescence, our transition from childhood to adulthood, rarely runs smoothly.  It is that hell where we demanded freedoms that were only dizzying because of our ineptitude in being able to manage them.    My own adolescence was appalling; my parents deserved awards for sticking with me.  I thought this experience would put me in pole position for understanding the adolescence of my own children; I was wrong.  If there was a button that would, when pressed, propel a child from new teenage-hood to the budding adult he or she is set to be, then parents would fight for the right to press it, and yet where then would children learn to manage without their parents, to work out their own parameters?

Luke Jackson’s new book, ‘Sex, Drugs and Asperger’s Syndrome”, is, as its title goes on to say, that user guide to adulthood that we all need, ASD or not.  The interesting thing about adolescence, the period when everything is new and different and frightening, is that we don’t know what we don’t know until life propels us into that first situation when we have a feeling that we should have known.  Of course we can’t ask parents, and rarely I suspect do students ask their teachers.  Luke admits to struggling with the sex-education concept of a banana being a penis and the vagina a diagram.  We all, as children no doubt do now, sat amongst our peers pretending we knew all about the banana analogy whilst all the while terrified that we did not.

This is a brilliant book.  Luke writes beautifully, engagingly and with wisdom.  There is nothing he shirks, it is all there, all the drugs, all the pitfalls of relationships, all the social gaffes and mistakes, all described with humour and without judgement.

Luke tells us he wondered whether or not to include the chapter on bullying; I am glad he did.   He writes compellingly about its long-term effects on self-confidence and esteem, and is rightly contemptuous of those whose advice is that it is ‘all part of growing up’ and ‘best ignored’. The damage done by bullying is horrific, and we know how many children and young people with ASDs have been excluded from school or become school refusers because of the uselessness and injustice of these two remarks and what they can lead to. Luke acknowledges that a bully is, indeed, best ignored, but he also knows the huge amount of work needed for a young person with ASDs to have the skills to be assertive enough to ignore the bully.  He describes his own journey, peppered with details of his failures and difficulties – including some very deep lows – as well as his successes, honestly and with no sense of self-pity, giving the reader the view that each success was by no means easy, but he achieved it eventually.

Luke’s explanation of the oft-disliked term ‘challenging behaviours’ is exactly as I understand it after years of working with people with ASDs.  He says:  “Challenging behaviour can become evident in the form of disruptive, often physically aggressive behaviour.  It can manifest in extreme forms, like self-harm, scratching, biting oneself or others, or through things like flapping or pica.  What’s important to note is that these are reactions to external stimuli, and when analysing how to deal with challenging behaviour, the cause is often overlooked.”  I agree wholeheartedly with this statement.  In all the schools I ever worked in, when a child was driven to using challenging behaviours (whilst not an ideal term I do like it better than ‘violent’ or ‘attacking’ or ‘aggressive’ behaviours), then the staff team would use functional behavioural analysis to try to work out what had driven that child to that point and how we could avoid that happening again.  I know that this is not necessarily the case in all educational settings.

I have two proposals for this book.  One, that parents forbid their children to read it. This would make it the most sought-after and read book amongst adolescents, as well read as Lady Chatterley was in her banned day.  Second, that the Secretary of State for Education makes this mandatory reading for every single teacher in the UK.  It would without question help teachers’ understanding of the struggle facing pupils with Asperger’s Syndrome in their classes. Since we now know that autism affects approximately one in 80 of the population, this would have a massively positive effect on many children in our schools – not a bad win-win wouldn’t you say Nicky?  It would also, I hope, shame that teacher who told Luke “when you come into my class, leave your autism at the door”.

I am off now to re-read ‘Freaks, Geeks and Asperger Syndrome’, the prequel to this book, to carry me through the arid period whilst I wait for Luke’s next user-guide for any other aspect of life.  It is certainly going to be as spot-on as these have both been for all of us, for those of us with ASDs and those of us without.

Review by Jude Ragan, Autistica Trustee