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Column To understand autism, try to climb into the shoes of someone with the condition

Stigma surrounding Autistic Spectrum conditions grows because the issue is not talked about enough in society. Tackling misunderstandings requires people to talk openly and honestly, writes Adam Harris.

HAPPY WORLD AUTISM Awareness Day! Throughout the globe today buildings such as the Empire State Building, the Pyramids, the London Eye and our own Blarney Castle will turn blue to mark the day and events and fundraisers will be held in towns and cities all around the world.

What’s it all about, though? For many touched by the condition or families struggling to obtain diagnosis, access services, or even just face up to the daily challenge of “living with autism” today may seem very tokenistic – a field day for the media and an opportunity for the great and good to be seen to support the condition before all reverts to normal tomorrow – little more or little less.

One in 88 people on average have a condition on the Autistic Spectrum

It is very easy to understand how people might feel like this – shouldn’t autism get more attention year round? Shouldn’t more funds be provided to supporting those with the condition instead of needing to organise massive fundraisers? Well, a lot of that is probably true but at the end of the day you still have to play the hand you are dealt and for us, the AS community in Ireland and across the world, today is an opportunity for a number of reasons.

One in 88 people on average have a condition on the Autistic Spectrum. If you break it down that should mean 1 to 2 people in your year group in school and maybe double or three times that amount in your college course; if you work for a multinational or large company it could mean between 5 and 10 colleagues and many, many more in the area you live, the events you attend and the people you meet throughout your life.

Yet if we are honest – what do the public really understand about the condition? How are our teachers or lecturers trained to support those affected? Are our companies open to people with autistic conditions working for them? I think it’s fair to say on all fronts – more needs to be done and before that more needs to be understood. The sad reality is that of the examples I have just listed the representation of people with autism is not proportional because those with the condition quite simply can’t cope or aren’t provided with the support they need in those environments.

‘The journey of a 1,000 miles starts with just one step’

Robert Kennedy once said “The journey of a 1,000 miles starts with just one step” and really that is what today is about. It would be lovely to think that when the clock strikes midnight and the day draws to a close, the public would understand the condition, employment for those with Autism would soar, bullying and exclusion disappear and the education system run like clockwork for those with the condition, but that won’t happen. What we can do today though is make the initial contact, take that first step, we can challenge those around us to try and learn something about the condition they didn’t know already, we can inform professionals be they teachers or employers about the condition and through media coverage and blogs; help them to climb into the shoes of someone with the condition and get some small insight as to how those on the spectrum operate.

If we can achieve that well today has been a massive success, and the journey won’t stop there. The employer who is struck by the fact that 86 per cent of those on the spectrum are long-term unemployed, will be inspired to take positive action, the teacher who thought the child in her class was just bold may try and look for solutions to the issues arising and people all around the world may try to be just that little bit more inclusive as they go about their day to day activities.

Destroying stigma

Before I conclude, I also think there is another positive aspect to today. In Ireland, and in many other countries, there is a big stigma around autism. I have met so many parents petrified to tell extended family, friends or other parents about their child’s condition for fear that it will lead to their exclusion or isolation. I know from my own experiences, as someone with Asperger’s Syndrome, as well as from speaking with others that the worry and discomfort I used to feel in telling someone, even my own best friends, about having the condition for fear that it would separate me from the pack or make me stand out. While some of this does stem from the fear of being treated “special” or differently, which I have written about before, much of it also stems from the fact that we don’t discuss the condition enough as a society and so don’t know how people will react to us talking about it.

Today, we put the shame to one side. Not only can we acknowledge and talk about our condition but we can be proud of who we are. If we all were to achieve that today, to get into the celebratory feel, to realise the world’s buildings are lit up for us and to see the joy so many with the condition bring to the world (not to mention to Aspie geniuses such as Einstein!) then the day is not tokenistic and is not once off because if those of us with the condition all learn to talk and open up more about it – understanding will grow and through our own self-advocacy awareness, openness and support across society will surely increase.

Happy World Autism Awareness Day – enjoy it, use it!

Adam Harris is the founder of AspergersAdvice.org and the Disability Advice Network. AspergersAdvice.org is an online support and social hub website for those affected by Asperger Syndrome and their families.

To find out more about this project, Adam’s story, Asperger Syndrome or other projects being planned by the Disability Advice Network or to get involved then please email AspergersAdvice@gmail.com or on Twitter @AspergersAdvice.

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    Mute Paul Cathy Lynam
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    Apr 2nd 2013, 4:40 PM

    Thank for such a brilliant piece our son has Asperger’s syndrome and while he copes very well it does lead to difficulties and particularly in the secondary education system which appears to just want pigeon whole people instead of embracing difference

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    Mute Adam Harris
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    Apr 2nd 2013, 7:11 PM

    Hi Paul,

    Thanks for your lovely comment.

    There are definetly many challenges for people with AS in Secondary School, I can say that from experience as I am preparing for the Leaving Cert!

    Would love if you checked out some of the pieces on AspergersAdvice.org about Second Level and Exams and also if you considered interacting with us on the site.

    Thanks,

    Adam

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    Mute simonjblake
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    Apr 2nd 2013, 4:52 PM

    Pity it didnt explain a little of the symptoms. Might help with identification and awareness of those not so familiar.

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    Mute Laura Ann McGrath
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    Apr 2nd 2013, 6:48 PM

    As i have a sibling with autism, I am speaking from experience. It is quite hard to list issues associated with autism. To explain them is a whole other kettle of fish! I understand where you are coming from though, there are plenty of Irish websites that are very resourceful and have been very helpful to me and my brothers :)

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    Mute Adam Harris
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    Apr 2nd 2013, 7:08 PM

    Hi Simon,

    Thanks for comment.

    For those wanting to find out more re symptoms etc. they can see our site AspergersAdvice.org or can read my earlier piece on thejournal.ie, where I talk about that – link here, http://www.thejournal.ie/readme/aspergers-special-needs-adam-harris-577457-Aug2012/

    Hope that helps!

    Adam

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    Mute Eric Wrafter
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    Apr 2nd 2013, 5:45 PM

    As commented before, I have Aspergers. Right now, I couldn’t be getting more support if I tried. Understanding management, understanding colleagues and medical support. Doing really well.
    But we need to talk about it, and make it normal. Then we will begin to have a fair society. Until then, nothing to do but keep plugging away at it.

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    Mute Adam Harris
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    Apr 2nd 2013, 7:09 PM

    Hi Eric,

    Delighted to hear you are getting such positive support.

    I could not agree more regarding the need for us to discuss the condition more, that is what we are trying to achieve with AspergersAdvice.org (and are currently preparing for a big redesign project to help us do this).

    Would love if you checked our site out and considered contributing.

    Thanks,

    Adam

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    Mute John Michael
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    Apr 2nd 2013, 4:57 PM

    My daughter has autism. When she is distressed we try and calm her by using sounds and colours that are soothing to us. It doesn’t work all the time because we forget she sees the world different and probably hears it differently as well. I think we need to start to try different things for children with autism because the current system, while it means well, isn’t working.

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    Mute Adam Harris
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    Apr 2nd 2013, 7:14 PM

    Hi John,

    I agree.

    I think a big problem is that the system often tries to impose a one size fits all approach instead of recognising everyone is different! In fact I think that is a problem in how the condition is perceived as a whole, not alone in regards services etc. but even in regards how people understand and treat those with the condition, people generally mean well but that doesn’t mean they get it or the fact that each person on the spectrum is totally different!

    We have some interesting articles on AspergersAdvice.org from people trying to innovate and find news ways to support people on the spectrum – they are well worth a look, would also love to see you getting involved with us through the site which is currently preparing to redesign and expand, catering for the whole autistic spectrum.

    Thanks,

    Adam

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    Mute John Michael
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    Apr 2nd 2013, 7:26 PM

    I’m already a member of Laois/Offaly families for Autism(LOFFA) but I would like to be involved someway. We are only going to reach a solution by everyone contributing. I was at the National Concert Hall today and you could see that each child was somehow different. Maybe we need to change to fit their requirements rather than the other way round.

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    Mute helen hamill
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    Apr 2nd 2013, 7:33 PM

    Great article Adam :)
    as always…
    a real ambassador for Autism!
    Helen and Fionn

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    Mute Adam Harris
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    Apr 2nd 2013, 7:38 PM

    Thanks Helen & Fionn,

    You guys are a constant source of inspiration for so many people (myself included) through both AspergersAdvice.org & your own AutisticandProud.wordprss.com

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    Mute Michael Roughan
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    Apr 2nd 2013, 11:22 PM

    Great article , well done. Some great comments . One thing I don’t understand here are the red thumbs on some of the comments . I have a 5 year old son with autism , and he is very funny , so affectionate , into mischief , but on some levels he miles ahead of his peers when it comes figures, reading and especially electronic devices. He loves making movies and narrating them in his own language . His talk has developed a lot in the last year. But then he has no sense of danger what so ever, oh and he thinks he is the boss in the house. What a gift of a son we got !!

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    Mute Duewest
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    Apr 2nd 2013, 11:45 PM

    @Michael. Your son is exactly how I would describe my Six year old boy who is also on the spectrum :)

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    Mute Duewest
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    Apr 2nd 2013, 11:50 PM

    Forgot to mention we have been very fortunate, we have an Assistance Dog from IGDB. A super dog. Unbelievable the difference it has made for the whole family. The dog is also helping with awareness to danger. Just amazing to be honest.

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    Mute sean malone
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    May 5th 2013, 11:33 PM

    Our son is the very same

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    Mute Paula Mcgrath O'Connor
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    Apr 2nd 2013, 7:48 PM

    Excellent article Adam, very well written. Keep spreading awareness! Aspergers is even less understood IMO than other autistic spectrum disorders

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    Mute Adam Harris
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    Apr 2nd 2013, 9:11 PM

    Hi Paula,

    Thanks a lot!

    Yeah – I think there are real problems regards people understanding how broad the Autistic Specturm really is. In fact I think people often even struggle to understand the vast array of disabilities out there, umbrella terms such as “Special Needs” are all too often used to bunch huge groups of people, with totally different needs together.

    Thanks,

    Adam

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    Mute Aodhan O'Cuana
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    Apr 2nd 2013, 6:43 PM

    There is an awareness about autism within wider society. Where issues arise is the lack of services for children and their families. Often the diagnosis needs more testing out but services in to the future are lacking and piecemeal. But Autism faces many challenges, the fact that DSM has reviewed Autism and Asperger’s Syndrome under the one category, once again shows us the fragility of how we assess and support a person with social and communication difficulties.

    I am amazed, like the UK, we need an Autism Act. This move to regulate the person through a specific act, if anything dehumanizes the person.

    What we face is a wider societal issue such as care and how we develop provisions for the person with disabilities. The lack of equal citizenship persons with a disability has in areas such as education, mental health and adult social care; which all persons with an intellectual, sensory or physical disability can be supported to be active citizens.

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    Mute Adam Harris
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    Apr 2nd 2013, 7:20 PM

    Hi Aodhan,

    I agree lack of services and indeed poor distribution of services is a big problem. DSM V will also pose big challenges and in truth it could be many years before we can clearly see its impact and how it has affected diagnosis, perception and support of people with Autism or Aspergers Syndrome in Ireland.

    My own views, as a person with Asperger’s, is that their is an awareness but all too often not a real understanding of the condition and its complexity among wider society and I think that ties in with some of the societal issues you raise.

    We have articles on many of the topics you raised over on AspergersAdvice.org – worth checking them out!

    Thanks,

    Adam

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    Mute EP
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    Apr 2nd 2013, 11:30 PM

    Such a broad spectrum, I would guess that one in eighty eight people on the AS is actually a gross understatement no?

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    Mute Pamela fegan
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    Jul 26th 2013, 12:23 AM

    We’ll said Adam. Knew when I met you years ago you’d be a voice to be heard.

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