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Newbie just starting on diagnostic treadmill

Kzintia

apologies for the large font format. I have varifocal glasses so when i become the cats hot water bottle & have to move the laptop, the text is then in the wrong place to see small letters!

Hello there,

50+ with 2 adult sons diagnosed ASD as children. The eldests paediatrician said “normally i say this to the Dad but in this case, sorry Mum he gets it from you”. That was 25 years ago, and it was a lightbulb moment as i came to realise why i had always found school (head like a weathercock) college (accused of cheating after the first round of exams because i would never answer out loud in class) & life in general so hard (generally like cats more than most people & phone-phobic). At least it meant i could cut myself some slack as to why i just did not ‘get’ most people.

I have also always had a problem with hearing but performed perfectly at a hearing test in a soundproofed environment. i actually burst into tears when the audiologist told me I had A1 hearing. “But why can’t i hear?” i wailed. A few probing questions later and she told me it sounded like i had an issue with auditory processing and that a hearing aid cannot help with that. Another lightbulb moment.

That was 4 years ago, so why seek assessment for myself now?

4 years ago we were still in aftershocks from Covid and i had been on the shielding list (other medical issues). COvid gave me a great excuse to avoid people, and not wanting to burden the NHS gave me another excuse to avoid further assessment. I am a great avoider.

I only asked for my hearing to be tested for the sake of my marriage; my husband had got so exasperated, yelling “when will you get your ears tested, you’re *****ing deaf!” after i had asked him to repeat something for the 5th time. I happened to be standing next to a near boiling kettle making the drink he had asked for but hey ho! He was actually a real sweetie, but even he had his limits.

And i have gotten off topic again, sorry.

i have been called for Jury duty, and am in a state of severe anxiety every time I think about it.

I went to my GP practice and told them i was worried about not being able to hear in the courtroom, and told her what the audiologist had said about the processing difficulty. I was told that wont excuse me from Jury duty, and that it is quiet in the courtroom, and only one person speaks at a time, so i should be ok. Oh and i am being referred back to audiology, even though the GP agreed that it sounded like i should have an assessment for ASD, but there’s a 3-4 year waiting list for that and they can’t even put me on the waiting list unless i have had a hearing test within the last 2 years.

Of course i neglected to mention that it terrifies me, that i feel nauseous just thinking about it (am near hyperventilating typing this), am on anti-depressants, have mobility issues, have a sleeping disorder, have social anxiety, and my ability to ‘put a smile on’ depends upon my energy levels (and this time of year i am utterly exhausted). And that’s without the huge worry that i could make a mistake in judgement and ruin someone’s life simply because i heard wrong. That really weighs on me.

i have already sent the forms back to Jury Selection so i cant add anything now, but at least i can email them. It would just be so much easier with a diagnosis rather than have to go into detail about what i have problems with. 

ANYway, i found myself here as it is a long time since i hit the research button on ASD/ ADHD/ Aspie/ pragmatic language impairment etc and had no idea there were so many (ahem) older neurodiverse people. 

Crumbs, i was only gonna say hi. 

Sorry about that. 

I do have a question though - am i the only one here that finds Big Bang Theory funny? I worked in various laboratories for 20 years (though in chemistry rather than physics) so that may be why. I saw many former colleagues in the various characters over the course of the show.

nite nite everyone

Kz

Parents

  • Hi and welcome to the community!

    Regarding your profile comment, by the way, you're fully welcome here - whether you have a diagnosis or not.

    Many of us here are also "late realised" and/or "late diagnosed", so you're in good company! :)

    Whilst the information that you've shared could be consistent with autism, we can't offer medical advice here, and the professionals involved in assessments also consider a lot of additional information.

    If you haven't yet seen them, you might like to read through the various resources in the NAS's recently revamped diagnosis hub:

    NAS - diagnosis hub

    They cover all stages of the process, with each section containing several articles relating to that stage:

    • Before diagnosis
    • Assessment and diagnosis 
    • After diagnosis 

    For example, these articles (from "Before diagnosis") would perhaps make for a particularly timely read:

    NAS - Signs that a child or adult may be autistic

    NAS - How to request an autism assessment

    If you live in England, you might particularly like to read about requesting an assessment via Right to Choose (which enables access to private providers who might have shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS).

    Some examples of Right to Choose providers are listed here, for example:

    ADHD and ASD assessment – Right To Choose

    Your hearing difficulties aside, there are many other aspects of autism that, when considered together, can merit a referral.

    The NAS articles include links to some screening questionnaires that you might like to complete, to get a better idea of whether your suspicions might be correct. You might prefer to use the website below for this, rather than the versions linked in the NAS article.

    The site provides some very useful commentary for each questionnaire, and also enables them to be completed online (with scores calculated for you), saved as PDFs and - if the results support your suspicions and you decide to seek a formal diagnosis - printed off to take with you to the GP.

    The AQ-10 or AQ-50 seem to be the most frequently used / required by GPs in support of NHS referrals (whether within the NHS or via a Right to Choose referral). (RAADS-R might also be helpful, although some recent research has thrown doubt on its validity as a screening tool):

    Embrace Autism - screening tests

  • in reply to Bunny

    Thank you Bunny, the thread on Jury service was very helpful. I feel conflicted as part of me would be fascinated by the whole process and consider it a civic obligation, then the reality of what will be required hits and I find myself struggling just to breathe. 

    The rest of the links i am working through and have given me a lot of info. Oh how i wish this website was around 25 years ago when son1 was diagnosed with ADHD/mild dyslexia. But then they did not really link it with autism back then. It was only when son2 was in the diagnostic process 10 years later that ASD began to encompass a whole range of what used to be separate conditions. 

    Son2’s paediatrician would not formally label Son2’s condition, only that he was on the autistic spectrum, but if i “wanted any tips on how to help him look up semantic pragmatic disorder”. Not all that useful when trying to push for a little extra help at school.

    I know i have used the words “condition” & “disorder”, which i personally have issue with, but that was the wording of the time. I see autism as the brain having a different operating system, and you don’t hear people saying iOS is a disorder compared to windows. They are different but both do the job if you know how to use them.

Reply
  • in reply to Bunny

    Thank you Bunny, the thread on Jury service was very helpful. I feel conflicted as part of me would be fascinated by the whole process and consider it a civic obligation, then the reality of what will be required hits and I find myself struggling just to breathe. 

    The rest of the links i am working through and have given me a lot of info. Oh how i wish this website was around 25 years ago when son1 was diagnosed with ADHD/mild dyslexia. But then they did not really link it with autism back then. It was only when son2 was in the diagnostic process 10 years later that ASD began to encompass a whole range of what used to be separate conditions. 

    Son2’s paediatrician would not formally label Son2’s condition, only that he was on the autistic spectrum, but if i “wanted any tips on how to help him look up semantic pragmatic disorder”. Not all that useful when trying to push for a little extra help at school.

    I know i have used the words “condition” & “disorder”, which i personally have issue with, but that was the wording of the time. I see autism as the brain having a different operating system, and you don’t hear people saying iOS is a disorder compared to windows. They are different but both do the job if you know how to use them.

Children
  • in reply to Kzintia
    Kzintia said:
    I know i have used the words “condition” & “disorder”, which i personally have issue with

    This is quite a common feeling from people, but the terms are medical definitions and are apprpriate to use in formal contexts.

    I think people are becoming more inclined to refuse terms they have an issue with which is fine, but it is always appropriate to use the proper terms in any medical discussions I think to avoid confusion when that confusion can be a problem (eg relaying your medical conditions to a new medical specialist who is looking to treat you).