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Dublin: 19 °C Tuesday 18 June, 2013

Column: ‘People speak to me like I’m ET’ – why social labelling is a problem

We need to change the way we view people with special needs, writes Adam Harris, who has Asperger Syndrome.

Adam Harris Founder of AspergersAdvice.org

IT IS ALMOST funny to think of the old cliché of the glass ‘half empty’ or ‘half full’, and to apply it to how we view people with any kind of minor form of special needs in this country, be it physical or psychological.

We don’t focus on what the person can do, which nine times out of ten is probably the same as everyone else, or maybe even above others in certain areas. Oh no. Instead we wish to highlight the person’s DISability to do something.

Personally I think we need to start viewing people with special needs as having disABILITIES.

I write this piece looking from the inside out. I am a 17 year old with Asperger Syndrome – which is a form on autism where people have normal or often above normal intelligence but can struggle with anxiety, social skills and other aspects of day to day life. If you met me you would likely never know – I am sociable, funny (or so I like to think!) and just as intelligent as the next individual you would meet.

I was fortunate, unlike too many others, to benefit from early intervention and as a result am really enjoying my life to the max. But I can say that I have seen first hand the effect that labels have. As a result, I am doing all I can to highlight issues relating to AspergerSyndrome and disability as whole through setting up new initiatives such as AspergersAdvice.org (which goes live next month) and the Disability Advice Network, which will manage the website along with other projects including a Disability ‘TripAdvisor’-style website.

Gazebo or umbrella?

So what are labels and who gives them out? Well in some respects we all need labels – for example, I needed diagnosis to get access to the services I needed for my condition; sick people need diagnosis for treatment; young people need to be recognised as such to access education. But it’s when we start to get vague and generalise that the problems really set in.

All too often the media writes vaguely about “young people” or “the disabled” without really looking at individuals, rather than broad brush strokes – you can no more say all Irish people are drunk fools and look like leprechauns, than you can say all people with special needs are stupid or all young people troublemakers.

Laws are often passed to help people with special needs but as this massive gazebo rather than an individual umbrella – and while we can probably all remember spending time in school on celebrating diversity, often the system seems to fail to explain that you can never generalise. Instead it leaves issues such as special needs as vague as possible; probably due to time constraints and to avoid offending anybody.

The effects of these breakdowns in communication are easy to see. It can often be hilarious when someone finds out you have special needs for the first time. On many occasions I have been at parties and other events when I might have a perfectly normal conversation with an individual, only for them to find out during the course of the night that I have a condition – and proceed to speak to me as if either I am deaf, or they only have very basic English!

Speaking to ET

Yet we cannot blame individuals for this crisis, because I know that every person who has tried to communicate to me as though they were speaking to ET does so with the best of intentions. They simply heard the DISability and due to little proper knowledge of the topic, bunched my disABILITY in with the thousands of others across the globe into this one nice vague term the media and state can use for everything – a kind of one-size-fits-all approach that is too often used against us young people as a whole.

I know that labels are not only thrown at those with special needs. How often have you heard sweeping statements like “those young people” or “all travellers”? Or perhaps most horrifically, the disgraceful generalisation thrown at the Polish community in Ireland by Judge Mary Devins.

However I think we have a huge amount to be optimistic about. What always pleases me is how my own friends and classmates seem to embrace individuals on their own merits rather than on any label traditionally associated with them. I think we young Irish really are the generation who can break the age-old tradition which really has evolved little since the medieval ironsmith’s brand. We are fortunate to have several fantastic organisations and initiatives around us such as SpunOut.ie to help us implement a more educated, understanding Irish society.

We young Irish have an opportunity to truly reform perception in this country for everyone’s benefit – as everyone gets labelled at some stage.

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. The website will be launched next month.

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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About the author:

Adam Harris  / Founder of AspergersAdvice.org

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Comments (20 Comments)

  • Very informative article,excellently written.Thank you.

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  • I have a twelve year old boy with aspergers and dyspraxia we like to refer to it as different abilities, thank you for raising this subject

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  • This is the best article I have read. You are right on the money about labels and I think those websites are an absolutely cracking idea! Please write more- it was a pleasure to read!

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  • Great article Adam!

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  • “you can no more say all Irish people are drunk fools and look like leprechauns, than you can say all people with special needs are stupid or all young people troublemakers.” Stereotypes are mental shortcuts that save people from having to think. The use of these stereotypes is so common among journalists and thus manifest broadly across all the media demonstrates the presence of gross ignorance. The question has to be why do we put up with such poor quality journalism?

    Congrats on the article Adam.

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  • I have two nephews on two different sides of the family who have Aspergers and in both situations their parents have never once made reference to the fact. Over twenty years I never really knew how to communicate with the boys and always felt I was saying or doing the wrong thing. Your article has opened a door for me but just a little and now I want to know more and more.
    Thank you so much for a very well crafted and informative piece of writing. Please continue on the same theme as we would all benefit.

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  • Brilliant piece well written Adam. Your mum is my first cousin & I’m so proud of my eloquent young relative. Looking forward to the website going live. Great inspiration & encouragement for young people with Aspergers.

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  • At last, an article on this topic in mainstream media that doesn’t make me cringe. People often think that my ASD boys are hearing impaired and need to be spoken to REALLY LOUDLY and s-l-o-w-l-y! The worst culprits are those involved in hse community health.

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  • nice one Adam. I have a son with autism at another point on the spectrum. I have always said “he is autistic, not stupid”. Like those with other types of disabilities he has enhanced other aspects of is intelligence to live in a neuro typical world. Hows that for labelling! Over the years, as his parent and guide in this world, I have developed my own methods of dealing with perceptions. When people stare, I stare back and meet their gaze in a curious manner. When he used his own verbaling to communicate I respond to him, not to others’ discomfort. That said, I find Irish society much more accepting of difference in public than other countries and I feel our hosting of Special Olympics has contributed to this. Media is quick to label but personal encounter sorts that out!

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  • Dear Adam, congratulations on your very informative discussion on the Late Late show tonight.My grandson has been diagnosed with the condition, and although he attends mainstream school, he is getting a lot of help both from the “system” the school and his very informed parents. It was so good to hear it described by you in such detail., and I can honestly say as a result ,I feel I have learnt a lot from you about the condition.Keep up the good, work, and THANK YOU.wishing you the very best of luck.
    Hazel Fitzgerald,
    laccabawnhouse@hotmail.com

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  • I don’t agree with Labels being used to describe differences in people and in particularity children. What is normal ? Somebody please tell me as im lost as to why there seems to be a benchmark that has been set for intellectual ability in today’s society . Schools demand that you get you child labeled if she or he needs special assistance and is not academically as clever as the next child.

    The over diagnosis of special needs in this country is becoming outrageous with thousands of kids being Diagnosed with the controversial ADD or ADHD everyday because parents or educators lose control of the differences in personality in children. Children being diagnosed medication and the claim that ” they are much calmer on the medication ” . Of course they are , they are on sedatives !!!

    People need to start dealing with the differences in children and stop labeling them and stigmatising them with all the these names that have no medical diagnosis in the majority of cases. The are based on a checklist of behavior that could apply to the whole population. Any parent that medicates a 4 year old for example for ADHD is a failed parent and the sooner we accept that and stop going down the American route the better.

    Almost every school shooting by teenagers in America was carried out by a student that was diagnosed with something and medicated with prozac ot some other mind altering drug. This is not a coincidence !! It clearly says it on the black box warnings ” patient may become suicidal or homicidal “. This of course is the extreme and medicating labels is the extreme but we are already heading that way here in Ireland .

    We need to accept differences in children and deal with those differences without the names. The education system needs to stop playing into the hands of psychiatrists by insisting on labels before they will give a child the extra 3 hours of assisted reading etc . Many parents handle their children’s differences admirably but sadly many don’t and the label of ADHD etc gives them a get out of jail free card when the child is not under control by them or the educators.

    I watched a child pull all the products from a supermarket one day in front of me. He then proceeded to kick them all over the floor because his mother would not buy one for him. She looked at the shop owner and said ” Sorry about that , he has ADHD ” . So is she suggesting he should be allowed to do this or treated differently in some way and smiling at him and asking him to stop was not the answer and he will continue to behave this way as he is being told everyday he has a label.

    Before anybody suggests i dont have an understanding , trust me i do . I have a child who was given a label of dyspraxia just to keep the school happy so she could get the assistance she needs. She is more difficult to deal with than another child of her age but we deal with it and treat her the same way and thankfully she is improving all the time.

    Watch this and make what you want of it http://youtu.be/EuxKdrCqJYg

    OK rant over on the labels

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    • sorry about the typos as i am on my dam iPhone :-)

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    • Just to correct one tiny point (although I agree with you about the over diagnosis of ADD – really hyperactive kids are something else completely) but they aren’t given sedatives, they are given amphetamines – the equivalent of pharmaceutical cocaine and meth (ritalin and Adderal respectively). That in itself is something to be considered – is it morally right to be prescribing such hard drugs to developing brains?

      In the past few years many of the major American pharmaceutical companies have paid large fines for the practice of encouraging off label prescription of antipsychotic drugs – the off label prescriptions involved prescribing to children – these too are extremely heavy duty drugs designed to treat extreme psychiatric disorders that typically do not develop until after adolescence – and psychiatrists in the US have taken to prescribing them to teens. As you say – many of these psychiatric drugs have black box warnings and some really crazy listed side effects. And the evidence of their efficacy – particularly in children and adolescents – is shaky at best.

      I wonder if the parents so willing to go get their kids diagnosed are aware of what they are setting their kids up for..

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    • Niall – Asperger Syndrome (which Adam and I have) and ADD/ADHD are two VERY different conditions.

      I was not “labelled in school” except as “gifted” and to suit my mother’s need to cover up abuse in the home. I had already had Asperger Syndrome for decades before I had even heard of it. I can appear perfectly normal (if too smart for anybody’s good) for the very little time I can spend with people at all, but I have never been able to live a normal life, and most of the things you take for granted about your everyday life are impossible to me, always have been, and always will be, whether I knew I had a “label” or not.

      So don’t judge what you do not know please.

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  • Great article Adam, you seem like a fascinating young person. I’ve assessed several young males with Aspergers. Their main issue was anxiety. I see the pros and cons of labels. The ADHD label in particular being the most contentious. One must remember that Aspergers is on the autistic spectrum and therefore varies among individual. However, there are some defining characteristics and the label helps to provide an idea of how a child with such difficulties might present. This can in a lot of cases speed up diagnosis and access to services. As Adam mentioned above, early intervention is hugely important and the process needs to be started as early as posdible.

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  • Your brother is busy supporting a government which is dismantling the meagre disability services that exist which will ensure that all future Adams are denied all the advantages you have enjoyed.

    It is great that you can highlight the issue of labels. But in the present climate, this is the least of the disabled worlds worries.

    What a wasted opportunity that you do not highlight the wretched pain and stress that so many families are going through as a result of your brothers actions in blindly voting for this governments mendacious actions.

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    • Please don’t hammer Adam for his brother’s doings,…I certainly should not like to be hammered for my bother’s!

      Remember he is only 17. I have a Granddaughter that age, and though she is intelligent and mature I try to keep anything I know, and experience of the worst, most harrowing aspects of life away from her. Not to patronise her, but because I don’t want her to emabark upon her adult life weighed down with more negativity than she needs to be, and I hope Adam’s family take the same attitude.

      If Simon annoys you as much as he does me he has a perfectly good email address, though, sadly, unless you flatter and praise him and everything he supports he will completely ignore you, unless you can catch him promoting himself in a facebook discussion and challenge him about that.

      My brother and I are such different people that one of us might as well be “ET”, the same may very well be true for Adam, give him a chance to grown into the man he will become before you attack him.

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  • @ Niall. There is much to comment on with your post, I’ll try to be brief:

    1. You assume these labels refer to academic ability, this is sometimes the case
    but in many cases it is completely misleading. Aspergers for example presents significant
    emotional/behavioural challenges – not academic.

    2. Overdiagnosis of special needs. I assume you have evidence to support that, if so would
    you be so kind as to cite it?

    3. Diagnostic checklists that could apply to most of the population. This is just factually incorrect
    and shows you have little or no understanding of the actual diagnostoc process. I suggest you take a close look at the DSM criteria for ASD as an example.

    4. Any parent that medicates a 4 year old with ADHD is a failed parent. This is an outragous statement
    and offensive to those parents who feel that they have no choice and are acting in the best interests
    of their child and with appropriate medical advice. Any parent who un-necessarily medicates a child is not acting in the childs best interests but that’s not what you said.

    5. Your point about accepting differences in children and dealing with them without the labels. A
    diagnostic label clearly sets out a set of common symptoms and allows parents to avail of a menu of potential
    interventions to help their child. Without this ‘label’ it is extremely difficult to understand something
    like Asperger syndrome for example. All medical/psychiatric conditions are described by labels so I have no
    clue as to what your beef is with this. It is true that many people have hang up’s about labels but I think that
    says more about them to be honest.

    Overall I think your heart is in the right place in relation to this issue but the way you have set out your argument
    is fairly simplistic and in some cases is just factually incorrect. Mostly it just plays into the hands of those who feel that there is no such thing as ASD/ADHD etc. The child is fine, they will grow out of it, the parents are uptight etc – trust me I have heard it all before. Without appropriate interventions (and yes medication can have a role to play) children can fail to reach their individual potential due to bullying, anxiety, lonliness, social exclusion etc.

    These are all serious issues and require a serious, evidence based approach to get the best outcomes for the children in question and by extension their families.

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  • Congratulations on last nights late late Adam I have three sons on the autism spectrum It was great as a mum to see you speak so well and inform people about Aspergers we need more people like you you shine a beacon for our children and your parents must be proud as punch .If your ever in Cork Id love you to visit Scoil triest or do a speech for parents You would be very welcome

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