Post Assessment Help

Hi All

Looking for a wee bit of help and advice. 

I recently went for an autism assessment and got my results back yesterday and not sure what do to now, if anything. 

Basically, the assessor has advised that I am not on the autism spectrum and provided me with some of the reasoning behind that decision. 

To give a little bit of background about myself, I am in my early 40s and a couple of years ago, my then 16 year old son was diagnosed as being autistic which made me start to look at my own behaviour over the years, so finally decided to get an assessment.

One of the issues I have with the results of my own assessment, is not the outcome in itself, but the reasons provided for the outcome. 

They mainly focused on what I was like growing up, stating the fact that I had friends going through school and that I performed reasonably well in school and I didn't show signs or hand flapping or rocking back and forth and movements like that. The assessor mentioned that I was very likeable during the assessment as well. 

One of my concerns is that my son doesn't present any of those traits either, had lots of friends at school, was really well liked by his teachers, can come across really nice and friendly, in general, but he is absolutely on the autism spectrum. 

I was mainly expecting to be told I was autistic, I have stimmed most of my life, I have a very limited diet, I have no close friends, actually have very little friends at all and have struggled for the last 25 years in making friends and some other things as well.

So my question is, what should I do now, is there any point is requesting a second opinion from the same organisation that have already stated that they don't believe I am on the spectrum or just accept their diagnosis and try and move on and do what I can?

Thanks in advance for any advice. 

  • I was told I was anxious by my local ASC screening service and they wouldn't give me an assessment for autism. They said my daytime routines were not rigid enough, and I didn't have developmental delays as a child. I went back to my GP and he obtained out of county funding to refer me for a second opinion, which you are entitled to. Yesterday I went to the Lorna Wing Centre in Essex and was diagnosed as autistic. More detail is in my thread from earlier today called Newly Diagnosed. Good luck if you decide to go ahead to get a second opinion. 

  • Martin… your explanation of things is excellent btw! That’s exactly what I wanted to say!! I’ll need to remember that. And yes the embarrassing halt was a horrific experience!! 

  • Yes, though I have problems with groups of people, I have always been able to hold conversations with one or two people, and put myself out to be friendly, and be a good listener. So I think that I come across as an engaged and likeable person. However, all socialising exhausts me and after a while I then need solitude in order to recover.

  • I had the same problem with reading aloud, my speed of comprehension when reading was much faster than my ability to translate the text into spoken words, so I tended to skip words, get lost and come to an embarrassing halt.

  • I'm male but in another post we had a discussion where a few of us believed we presented the same as female if you get what i mean

  • I’ve been pondering the same kind of stuff about my childhood for when assessment comes around. I was likeable. Had friends albeit limited. I didn’t stim. I fidgeted - tore paper into small pieces - chair rocked - nail biter etc. but got through ok and have always been able to manage and learn. But I’d happily be on my own than with others.  Reading was a struggle. Getting mixed up. Reading aloud words out of sequence cos my brain had already seen a word further down the line etc.  I’d more like skim work and memorise the information the previous evening before say a test. The thump in my chest before they asked people to read aloud parts of a book was the most frightening thing I can recall in school.  I’m 46 so back then you just coped. My parents in mid 70’s won’t really understand this and what I’m going through so also concerned on what they might say if they are included. I’m just being stupid apparently - they might see the traits now but it’s probably a reflection on them when I was young so therefore it never happened! In 2 years I’ll let you know how I got on!!!!!! 
    ps… get another opinion

  • I wouldn’t use the same organisation for a second opinion. You will get the same answer.

    Hmm, your likeable. So someone Autistic shouldn’t be? I don’t get this. The same was said about my daughter, along with other nonsense about her appearance. She has friends, and she had friends at school. She masked until she could no longer, at about 13. She then lost some friends. 

    It is hard to diagnose an adult, because there are no guidelines like there are with children. An adult will have learnt to adapt and live within their capabilities. You would need to find someone who knows what to look for and what to ask, and who has experience with females (I’ve assumed you are female). They would need to speak to someone who knew you as a child, but this isn’t always necessary.

    If you find someone suitable, go armed with lots of information about your social capabilities, routines and sensory problems. 

  • I didn't get a diagnosis because I don't have enough routines apparently but identify with so much on here that I don't think I need the bit of paper.  Also I know myself better then anybody else and the struggles I have.  I found this piece of research https://www.gold.ac.uk/news/autism-and-ageing/ which suggests that you may not show much at an early age but it develops over time, the research into Autism is continuing all the time so they may find out other things, plus with the number of older people being diagnosed I do think it can make itself more pronounced as you get older

  • I'm a diagnosed autistic and I'm still in regular contact with friends I first met at school. There is a clause in the DSM 5 diagnostic criteria that requires difficulties/traits to date back to childhood, but such problems do not have to include a complete inability to make friends. I received prizes for academic attainment throughout my school days, even though I hated and loathed school and had lots of social and sensory difficulties in school. I once had a tooth that was not painful extracted, just to have a few days off school, I hated it so much. My very real difficulties with school did not make me unintelligent or unable to learn, just very unhappy. I have never hand-flapped or rocked - I did other things like spinning and fiddling with mechanical objects. I really do not understand the point of view of your assessors, they seem to have confused 'having problems' with 'the inability to cope with problems'. I call this the 'Long John Silver effect', just because he could get around with the use of a crutch, only having the one leg had no effect on him . He definitely had problems, but was able to overcome them to a certain extent. 

    Personally I would push for a referral to other diagnosticians, as the people you saw seem incompetent.

  • That is really disapointing to hear as I am in my 50's and awaiting an assment. It is the childhood stuff I don't get, whats that got to do with the problems I have now. I could also be classed as 'likeable'  I can also hold a conversation, I had friends at school, not many but some and I only stim in private. 

    I do wonder if professionals struggle with diagnosing adults after spending the majourity of their time with kids. Do they understand we have had years of fighting this to lead as normal life as we can? Some of us have held down jobs all our lives, have wives/husbands, families, mortgages, own businesses etc. None of that makes us less autistic than somebody who constantly stims, and had had very diffrent life outcomes. One things for sure when I get my assment I will be piling it on and holding back nothing.