mis diagnosed question regarding meltdowns and people

Hi

All my lilfe when I have had frustration or overwhelm i hit myself and bite myself.

I did not realise this was related to autism until recently in the last few years.

I got tested in 2015 but because I have substance misuse issues and was on pregabalin when tested, I was tested as negative.

Also, I rock back and forth and this was missed by both myself and my relative who filled out the questionnaire.

My question is, what happens if someone like me cannot get their own space, will my meltdowns get worse?

Many thanks

Parents

  • My question is, what happens if someone like me cannot get their own space, will my meltdowns get worse?

    In my case, I have shutdowns (or as I call them lock-ins) which involve mild rather than extreme seizures now, with basically major bright light and seriously colourful geometrics of seven varieties, as being my meltdowns.

    So rather than as externalising all the pent up frustration or agitation as essentially being hypertension, in contrast to hitting and biting myself in the external sense ~ I used to bite my tongue and cut and bruise myself during the seizures which I experience in the internal sense.

    I have learnt, over the years, to improve the internalisation of my meltdowns (i.e. making them less intense) by learning to do deep-gentle-pelvic breathing continuously, and also by gauging how much tension I can deal with, involving activities, social interactions and all that on a day-to-day-week-by-week-basis, and knowing my limits and not then overdoing things.

    The consistent deep-pelvic breathing (which simply involves imagining that the bladder is one's lungs and breathing as if this is so) recycles for use the built-up (hypertensive) energy, and little by little with practice this increased the ability to stay focused and have more productive outcomes ~ i.e. those ones involving less and less bites, cuts and bruises.


  • Hi

    Thanks for answering and sorry for the late reply.

    I had another meltdown last night, they get worse with stress.

    I think as I shared a bedroom and couldnt get enough of my own space as a youngster I developed borderline personality disorder, my official diagnosis, as I lost my identity due to so many people.

    The autism specialist thought i had ADHD but I couldnt go for the assessment without drugs so although the nurse thought i had ADHD she invited me back to see the ADHD consultant but I couldnt go sober so i postponed and they lost the funding so they could not make me another appintment.

    Instead i got a letter saying that I had to be drug free for an adhd assessment and I still have 36mg of valium to reduce from so it will take ages.

    My autism assessor said I was too good at socialising and made good eye contact as the drugs I was abusing at the time was pregabalin which gave me confidence.

    When he asked me what I would say to a friend who had a dress I didnt like, I said i would be diplomatic, when really i hate quetsions like that, so the drugs influenced my answers.

    He also said I made good gestures and eye contact, but this was due to the drugs.

    He said even if I was using my intellect to be good socially he thought my difficultites were down to soemthign else.

    I rang the autism centre a couple of months ago and got a letter I should have got 2 years ago detailing why they dont think I am autistic, but I am.

    Last night I banged my head, shook my hands, rocked back and forth, couldnt make eye contact, and loads of other traits.

    Ive done all the aspergers tests online and I know they are not diagnositc but I score really highly.

    I am scared stiff that by the time I am off valium, I will not be allowed to be reassessed, as the autism centre said they do not automatically reassess people, they have a big meeting.

    I know there is nothing I can do, right now, but what a waste of a life and also not haveing an official diagnosis means people think I am demand avoidant, and tantrummy and dont take me seroiusly. They think I am aloof and standn offish, when really if I had my diagnosis they would understand so i feel really isolated.

    Also, I dont have access to welfare benefits for autism or a bus pass or blue badge, which I would have if I had got the diagnosis.

    I abuse drugs as I bought a flat with a breached lease and am stuck with an unsellable property which has had lots of waterleaks as the old owner made lots of alerations without permission from the building owner, so the solicitor says i am now responsible as I never looked at the solicitors letter properly asking me to read the plans.

    If I had not bought this flat, I wouldnt have the worries I have and I would not be abusing drugs. I am coming off valium steadily, its the last drug I am on, Ive given up boozes, opiates, cannabis, tobacco, pregabalin, now its  just the valium, the anxiety is unbearable.

    I feel I have wasted my life because I just want to connect with fellow autists but feel a fraud without an official diagnosis.

  • I just want to connect with fellow autists but feel a fraud without an official diagnosis.

    Just to mention that there is a movement to accept self-identification among autistic people. Some people don't feel they need an official diagnosis. If you think you're autistic, you would be welcome at most autistic-run events I know.

    I don't see any reason your meltdowns will get worse - if you come to know what your stressors are, other people may be able to help separate you from them.

Reply
  • I just want to connect with fellow autists but feel a fraud without an official diagnosis.

    Just to mention that there is a movement to accept self-identification among autistic people. Some people don't feel they need an official diagnosis. If you think you're autistic, you would be welcome at most autistic-run events I know.

    I don't see any reason your meltdowns will get worse - if you come to know what your stressors are, other people may be able to help separate you from them.

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