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Going for adult diagnosis - advice?

LeonieDelt's picture
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LeonieDelt


Going for adult diagnosis - advice?

Fri 17 Jan 2014 9:29am
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Hi - I am going for an NHS adult diagnosis in a few weeks' time.

Both of my children have NHS diagnoses, as does my husband (!!) All Are HFA / HF ASD.

I went to the Women and Girls NAS conference in 2012 and felt that they were talking to me as much as my children. I score a 43 on the AQ and something quite low like 18 on the EQ.

I am seeing a consultant psychiatrist who runs an ASD/ADHD clinic, so i am seeing the right person, afaik.

I have written up as much of my life as I possibly can, with my mother's help. She lives on another continent so all i have are my friends and my husband, who so far isnt being very supportive.

What do i need to take with me? I have found old photographs that, in my mind, reinforce things, so should i take them along?

Does anyone have any advice for me? I am very nervous. Obviously if the shrink doesn't think I have AS / ASD, or think i have something else, i will then have that to contend with. :/

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  • Whirling Mind's picture

    The advice I would give is this: drop any social mask you have developed when you have your assessment.  So many clinicians cannot fathom the female presentation, despite research and information out there.

    You need to forget the persona you may have developed to survive in society, and be that exposed person underneath, defects and all, it's scary but will help if they can see the real you.  If you use your social persona they may not be able to see below it and see your real issues.  The human mind is easily confused, so no matter what you tell them, if you don't look like it is the case, they will struggle to believe it if they are not very intuitive and experienced and their personal bias can affect the outcome.

    Perhaps point out, that you are happy for them to run clinical tests for differential diagnoses to ensure that all options are covered so that they can ascertain your difficulties are down to AS (or not).

    Do you have any past school reports, or employment staff appraisals that have any telling comments?

    Anything in your childhood medically that would support an ASC diagnosis?

    Are any of your friends/acquaintances able to write a letter describing your difficulties/traits with an offer that they are happy to discuss further with the clinician if required?

    When you go in, if they have arranged what I call confrontational seating, ask for your seat to be side-on if you prefer it that way, or even to look out of a window so that you can use your normal level of eye-contact without being intimidated.  Don't be afraid to ask for any reasonable adjustments in the assessment to make it more comfortable and accessible for you.

    With your husband having ASC, this might slightly muddy the waters regarding your children having it, because if they think you don't present as obviously ASC (which is entirely possible even if you have it), and you try to use the genetic card, they can say that your children could have got it from your husband so it's irrelevant.

    I have a diagnosis and I always score 43-50 on the AQ and I scored 8 on the EQ.  Have you ever taken the others (SQ = systemising quotient, FQ = friendship quotient etc.)?  They are available here: http://www.autismresearchcentre.com/arc_tests

    Good luck!

  • LeonieDelt's picture

    I dont have any reports or anything from school with me in the UK - i am from another country. :/

    I do have information from my mom telling me that i was clearly hyperlexic as a child, identifying numbers/letters at 18 months of age and reading books at 2. I have written down what she said and am happy for them to phone her, but expecting anything written from her at this point in time is impractical.

    My friend (who is also a SN trained TA) had written me a letter for the shrink telling them what its like to talk to me (that i talk at people, that i can't scaffold a conversation, that i can't cope with more than 1 chat partner at a time, dont know social graces, dont have a filter, tell too much and have no idea about social strata). I have another friend who has offered to come along if i want her to.

    My childrens' SALT tells me the diagnosis is an obvious one. But i am still nervous.

    Unfortunately I dont have any employee reports the last job i held here was 11 years ago because i had children, and they've turned out to be autistic - and that's a full time job in itself. I wouldn't know where to find any reports from that time in my life as we've moved house a few times since.

  • Whirling Mind's picture

    You're right about being a parent to autistic children being a full-time job, both mine are autistic too.

    It sounds like you probably have enough information to take.  Many adults would have less than that.

  • LeonieDelt's picture

    I just took this test:

    http://www.aspietests.org/sq/questions.php

    And i scored 98.

  • LeonieDelt's picture

    I just took this test: http://aspietests.org/fq/questions.php

    and I scored 51.

  • LeonieDelt's picture

    and i just took this test:http://aspietests.org/raads/questions.php?show=1

    and scored 149.

  • Whirling Mind's picture

    Be careful about bringing along any unvalidated test results, I would only bring the Simon Baron-Cohen test results if you are going to bring anything.  I say this from personal experience, as they will brush anything unvalidated away.

  • LeonieDelt's picture

    Aye. I have some printouts from a different psychologist I could fill in prior to going, but i imagine they'll want me to sit there and fill them in as part of the assessment?

    Its more the female presentation i'm worried about. I am afraid that all my coping mechanisms will pop out as they are reflexive, and i will not be seen for the person I am underneath it all. :/

    I cannot help but be nervous - and that brings out the coping. It also triggers partial seizures which is annoying too, while i'm trying to talk.

  • VictoriaE's picture

    Hi LeonieDelt welcome to the forum. I hope that WM's advice has helped and hope that the assessment goes well, do keep us posted Smile

    Victoria, Information Officer, Ambitious about Autism
  • LeonieDelt's picture

    Thank you. So take the photos but leave at home the unvalidated assessments. Cool.

    Leave the facade behind - that's scary. Its my makeup (i dont wear any) - my camoflage.

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