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Why professionals should look out for ' not obvious' Aspergers.

Hope

 

I have a diagnosis of Aspergers, which was given to me four years ago by a multi-disciplinary team of professionals, but only after I instigated the process.

At school, I was labelled an ''enigmatic'' child because no one really understood me. An educational psychologist assessed me when I was in year 6, and recommended that I should receive a statement of SEN straight away. The school dragged their heels and did nothing. No reason for my difficulties was given, other than that I was 'emotionally and physically immature' (taken from the Ed psych report, that is still in my possession).

I am not an'obvious' case. I do engage with people, my voice is not monotonous, I don't look at the ground as I speak, or display any obvious autistic behaviours. I certainly do display autistic behaviours, it is just I am very good at covering them up when I am in public. I am articulate and self-aware- too self-aware, in fact. Therefore, people easily labelled me as 'shy', 'troublesome', 'obnoxious', a 'slow learner' etc. But despite not being 'obvious', I am really affected by my Aspergers. It causes chronic anxiety, a feeling of being on edge all the time, environmental overload, problems understanding the intentioms of other people, obsessive compulsive behaviours.

What worries me is that less 'obvious' cases fall through the cracks, while the person with the undiagnosed condition develops serious problems that prevent them from holding down employment, making sense of their world, and risking serious mental health problems. You should never judge a book by its cover, as the saying goes, and someone who appears to be coping, and does not seem autistic at first glance, may well have serious disabling issues. It is  not good enough to say that someone's problem was missed because they did not come across as ''obvious'. Professionals need to look out for the less obvious cases, who are often struggling the most, or certainly no less than the more typical presentations.

  • I'm 18 and only just getting a diagnosis. My parents never noticed I was different as they are both a little aspergers themselves. I've always done well at school because I have a clinical mind and good rote memory but recently my grades have been going down which I now know is likely due to my aspergers.

    If I had got a diagnosis sooner I could have had the support I needed and wouldn't now be serverely anxious of social situations, slow to make friends and I may not have been bullied so much throuhg school.

    I hope more people speak out about these case so other people won't have to go through such a long wait.

  • Kalajaro @ I agree and I am with your there Undecided

  • The sad fact is, so many people are now depressed, suicidal, and as a result of ,loss, unemployment reduced wages etc.

    The goverment doesn't care enough to put safety nets in place for 'normal' people who develop anxiety problems to be taken care of and supported, why would they bother trying to improve the quality of life for those whose whole lives' are effect each and every day when they could be off saving money for them and their friends?

    Seriously lost faith in this country as a whole :( Desperate to leave once I get out of uni but need to do research on whether Canada is aspergers friendly.

  • quote Longman "Strangely I've found myself in another local authority that hasn't bothered to set up an autism partnership board"

    unbelievable ! there needs to be an overall regulator checking this stuff out and getting feed back from the autism community !!!! You should be able to report your difficults via the NAS and there should be a crisis phoneline from the NAS.

     

  • I think Paull (another forum member) has been having similar difficulties, regarding Local Authority taking no serious action.

  • Re "falling through the cracks" I do feel strongly that the biggest issue with those who are abler, better able to cope in the world, is our experiences are not taken into account.

    I understand the emphasis in research and clinical contexts is about finding a cure. However so little is done to research ways of improving quality of life meantime.

    A lot of clinical experience is with people with comorbid conditions or more extreme symptoms - OCD, depression, environmental distress etc.

    This gives perhaps a misleading understanding of the key difficulties faced by people on the spectrum, that are due to the spectrum and nothing else.

    The logical people to interview, observe and study might be those primarily affected by spectrum issues rather than additional problems.  People more able or coping better might be better able to inform clinicians and researchers about the problems faced by people on the spectrum.

    But those are the people who "fall through the cracks", who aren't consulted, aren't considered able to contribute anything.

    It needs a new perspective. Look at how people, whether abler or more severely affected cope with everyday life and use that knowledge to inform understanding and solutions to finding a cure. Seems logical to me - but I cannot find any clinicians or researchers who think that way.

    Sorry, been off air for a while during a move to another part of the country. Strangely I've found myself in another local authority that hasn't bothered to set up an autism partnership board.

  • quote susie "although we may not show empathy in the conventional way that certainly does not mean that we dont feel it"

    150% !!! I am oversensitive inside which gets expressed as anxiety, the emotional response is transferred into my whole body, which freezes me up expressing it normally.

  • Anonymous
    Anonymous

    With you on the empathy and mother bit Silver100. I feel empathy for others as a physical pain. I try to remember that the "traits of Autism" are decided by so called normal people and that although we may not show empathy in the conventional way that certainly does not mean that we dont feel it. I was frightened of my mother and if nothing else she inadvertantly taught me how to predict behavior - less said bout her the better though! Nearly wasn't tested for aspergers cos I made eye contact and was "very articulate" on first meeting with pyschologist... lots of work and learning needs to be done before we've any hope of being understood 

  • I think your psychologist is right autismtwo, most of us with late diagnoses have had all sorts of others first - I also had the ones you have had, and my therapist said she couldn't use the same things with me as with others.  I also think a lot of us have had to suggest it to. When I first suggested it the therapist said that I wasn't obvious but it did make a lot of sense.

    I think another isuse is that most of us are clever enough to learn a lot intellectually that others learn intuitively which means in some situations it is hidden and only becomes more apparent when people get to know us better.

    Part of the problem is people expectations. The reason I wasn't obvious is because I don't lack empathy and there is a believe that you don't have empathy with AS. Firstly, I have been told it is a bit different in me and secondly we learn intellectually to imagine what we would feel like. Having a mother I was frightened of taught me to try and predict behaviour.

  • So we suffer in silence. It is really not good enough.

  • been down the late diagnosis route,,, the psychologist says it is quite hard to diagnosis someone with adult aspergers because they are displaying secondary conditions which are diagnosed as primary conditions initial, for example with me it was O.C.D, Depression, GAD, social phobia then Aspergers,, when I DID NOT RESPOND TO DRUGS OR COGNITIVE(CBT) therapy, so what they said at the time was,, I was continuing down the autism spectrum line, so in sense they were trying to treat me away from autism to confirm I had autism.

    Trial and Error is being used towards a direction towards the true answer.,, I think you are right maybe they should try and find another way of diagnosing aspergers. There is 50,000 people in scotland with aspergers, statistically there is a hell of lot more, going by other countries correlations.

    What you are talking about is the medical sector and NAS go for soft option cases,, full autism, it would cost them to much time and resources to find and treat half or quarter cases of autism. As they say, there is not problem until it is recognised and even then if it can be hidden from the public eye whats the problem ? No one sees, no one cares.