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ASD assessment says ASD traits, not enough for a diagnosis

NAS62215

Hi,

I am a female in my 30’s. I have been waiting for a ASD diagnosis for years. I eventually went privately and it came back that I have ASD traits, but not a diagnosis. The bits that I didn’t fit on where the structure and routines (I am very disorganised so I find it hard to stick to routines even if I wanted to).

I was diagnosed with dyslexia 5 years ago, my reading comprehension was in 5th percentile but perceptual reasoning in 92nd percentile. I had the same thing with a speech and language assessment showed huge differences in my scores (9th to 95th percentile). The speech and language therapist said my profile was similar to her ASD clients (I had poor skills getting the ‘gist’).

I was also diagnosed with ADD 3/4 years ago but the psychiatrist would not refer me for an ASD assessment (he said I was functioning too well because at the time I had a job).

But I have been working with an ASD mentor recently and she is really really helping me understand things (like what I am missing) and now I feel really disppointed and kind of like a fraud that I don’t have a diagnosis.

The main things that I am struggling with is that my mind is blank a lot. Like when I was working, someone might ask a question and my mind is blank and in meetings I could not contribute because they talk in such broad language. I need ALL the detail to understand and I need a picture. Like I went to an exercise class and the guy said ‘first class’ so I thought of a first class stamp, a first class train and then a membership system. I did not understand he meant ‘is this your first class’. I think very literally. And in films, my friends discuss all the complex characters interactions afterwards and I don’t see them, I only see what happens. But I notice different things, like I notice peoples patterns, like if they are not their normal self because of how they text or how much they are in touch or other things. I notice if their movement is different or their voice is a different speed. 

Is this an ASD thing? Does everyone with ASD follow strict routines? 

I did not know I was neurodiverse until my late 20’s so I also did what I thought I was meant to do and was social ish. I have lived in shared housing out of financial necessity not because I wanted to. 

They also said I don’t have a special interest but I tend to get obsessive about the thing I am doing. Like I love searching for houses on Zoopla and I might spend 2/3 hours doing this. Or when I was working I get obsessive about a tiny part of the work that is not important but I can’t move on until it’s solved. 

I have always lived with people until recently and it takes me a while to get absorbed in and out of things so I always felt stressed with so many people around so I felt like I havn’t had space to focus on my interests. I am too busy exercising or doing something to keep my anxiety down.

Am I not really autistic? The ASD traits is not helpful to me. 

Parents

  • Well I am a diagnosed Aspie and there were many traits. I have the common ones, problem with eye contact, sensitive hearing, always noticing things other people don't,  useless remembering dates and phone numbers, fussy eater, have a couple of obsessive hobbies, only like one music genre...Like you I can easily get obsessed with certains things a work. Being an Engineer if things dint agree with simulations, I cant rest until I have solved it. I wish I was more organised,, but I will plan out a day (particularly when a work) and rehearse what I will do, this includes future social interactions eg going to a shop, GP, hairdresser etc. This makes it less stressful but if things go "off script" I get easily confused and my brain just slows up. Certain situations make me stressed eg certain noise or smell at a restaurant or just a busy Supermarket, having to dodge lots of people. I am fussy about food and eat the same things all the time. I don't like change and like to stick to places I know, eg pubs, restaurants, holiday locations and of course work. I have been with the same Company for 32 years, so people with Autism can certainly hold down a job especially anything to do with Accounting, Science, Engineering etc, but I still get in trouble for speaking my mind though. I have a very strong morality and hate anyone who breaks the rules. I can't lie, mainly because I can't make up a story or an excuse, so at least I would never cheat on my wife. Finally I dont really like physical contact, I am definitely not a "hugger" and always make a bolt for the door at family get togethers  when it's time to leave. So in my case there are loads of Aspie traits and because it's hard to discuss these are remember them in front of someone eg a Psychiatrist or Psychologist, I wrote them all down with anecdotes taken from my life, including when I was a child. I passed all these notes (8 pages of A4) to my GP, then a private Psychiatrist and then to a private Psychologist as part of the assessment. Perhaps, you should do the same? In my case the private Psychiatrist saw me for 1:45 and concluded he was 95% certain I had Aspergers ( btw my son was diagnosed and it's very common in families, my mother definitely had it, so if no one in your family has it, it is unlikely you do). Then I had the full private assessment with ADOS test, and they confirmed my previous diagnosis. So my advice would be to write everything down that you think is odd or impacts on your life, that shouldn't and try again for a diagnosis private or NHS. I hope you find your answers:)

  • in reply to JohnS

    Thanks very much for the information and sharing your experiences. 
    No one else has a diagnosis in my family, I think it would be easy to find traits but no diagnosis. Maybe this means I do only have traits. I don’t want them to diagnose me if I am not autistic. I have just been getting ASD employment support and it is really helpful but may now stop because I don’t have a formal diagnosis. This is the main thing that is frustrating.

    Thanks for the advice r.e. NHS.

Reply
  • in reply to JohnS

    Thanks very much for the information and sharing your experiences. 
    No one else has a diagnosis in my family, I think it would be easy to find traits but no diagnosis. Maybe this means I do only have traits. I don’t want them to diagnose me if I am not autistic. I have just been getting ASD employment support and it is really helpful but may now stop because I don’t have a formal diagnosis. This is the main thing that is frustrating.

    Thanks for the advice r.e. NHS.

Children
  • in reply to NAS62215

    Hi, I d9nt think you would be diagnosed with ASD unless you had it, after all these are Professionals with a reputation to keep. In my case, I wrote all my quirks and experiences and I even suggested I suffered from some sort of anxiety disorder I never even suggested ASD until the Psychiatrist said right at the end of our session, hecwas 95% certain I had Aspergers. When I went for my Assessment, the initial consultation was to determine whether I was "suitable" for an assessment, even though I was referred by the Psychiatrist. There was a communication problem in that my referral was send to one particular branch of Hampshire & Surrey Psychologists and when I hadn't heard anything, I made a general enquiry and was seen by another branch??. Of course you can be cynical and say if course they will do an assessment, because they might need the work, but I had to wait a couple of months, because they were busy.  My Psychologists only worked privately 2 days a week. I did feel a bit of a fraud throughout the whole process but as I said I never mentioned ASD but only when I mentioned by son was diagnosed and I always assumed that I was suffering from some form of general anxiety disorder.

    It is possible to have some ASD symptoms without having ASD. The only way you will know is if you take a hard long look at your life and compare with others around you to see if you are different? 

    I started my write up with the first issue I could remember as a child when I hated wearing socks and shoes, even in winter and got reported and told off my a Policeman (my parents had to take me to the police station) I was probably 5-6 years old?

    Later stories for example I was in Cafe Nero and some woman brought in her own salad and the dressing on it was making me want to throw up! My wife couldn't work out why I keeping my coffee cup near my nose all the time. Of course she couldn't  smell anything. These are the sort of anecdotes I wrote up that got passed to my GP and Psychiatrist etc.

    The question you need to ask yourself,  is do you want a diagnosis? I dont need any special treatment although I do wear medical wristband and carry my Austism card. Personally, I hate using the word Autistic because people associate that with a "difficult screaming child" (watch the film the Accountant and you will see what I mean).

    So I still think the best thing is to write everything down and be open minded when you next see a GP, Psychiatrist or Psychologist. Tell them you have problems with day to day life but can't understand why and then present your case. If they think you dont have ASD, then you probably dont.

    BTW how do you score on the AQ and EQ tests?