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How has a Diagnosis Helped or Hindered you?

Formless

Hello everyone,

I am a new member. I was led here following taking a psychometric test on judgement for a job of which my results really surprised me. The long and short of it was that I was assessed and not being very proficient in 'seeing the big picture'. I've always known that I have to break things down to the tiniest details and reconstruct them in my mind in order to understand, but I still thought I was able to 'see the big picture'. So in my surprise I started thinking. Various other things I have always found difficult came to mind and I realised the similarity between these difficulties and the difficulties of my brother, son and cousin who are all diagnosed with high-functioning ASD. Probably my biggest lifespan difficulty is relationships, for various reasons related to misinterpretation, emotional processing, monologuing, being misunderstood and struggling with cognitive overload in social situations. I need notice and prep time for social occasions and it doesn't take much for me to crawl out of my skin. As for group conversations - forget it. 

I find it difficult to accurately interpret other people's facial expressions and find myself constantly asking (my intimates) or wondering (acquaintances) what they mean. To the extent that in personal relationships I make it known that I point blank refuse to attempt to 'read between the lines' because I know I usually get it wrong. I get hunches and intuitions from time to time that can be correct, but even those can often be wrong. I have had persistent communication issues in relationships and I am ashamed to say that I always blamed the other person for either being vague (seemed that way to me), avoidant, disengaged or lacking in self-awareness (ha!). Basically I'm constantly blindsided by responses and outcomes from people I'm in relationships with and it creates so much anxiety I wonder if it is worth it in the long-run. Perhaps celibacy would be less distressing. 

I have issues with repetition and rehearsing as well. The scenarios I practice can be so real that when the actual situation I have rehearsed for arises and doesn't follow any of my scenarios, the anxiety is overwhelming as I have no idea how to respond and the stakes always seem so high. It drains the life out of me and I have to periodically retreat to recover. I used to recover much more quickly, but recently, it has been taking up to a week to recover energetically and emotionally, I can hardly get anything done and I have things that really have to be done to deadlines. 

There's other stuff that is relevant, but I'm veering away from the OP. Most of the nuances I can manage as long as I am left alone to do so (retreat when I need to, absorb when I'm on a roll, avoiding triggers when I'm feeling drained) but my apparent impairments regarding interpretation and communication are really draining the life out of me now, having tried a thousand ways to understand or manage these. I know that it can be difficult, if not impossible (in some areas) to get a formal ASD diagnosis as a high-functioning adult and private assessments seem to settle around the equally-impossible 2000.00 fee range. So what I am asking is, was your formal diagnosis worth it? How did it help you? Or do you regret it? Did it hinder you in any way?

Meant to add: I took the AQ online and scored 37. 32 and above is said to indicate ASD traits warranting further assessment.

* EDIT: Can I also ask if anyone does this thing inside their head where they can 'close' their hearing a bit from the inside? I have been doing this since I was a kid to try manage loud noise. I still do it, for example, during fireworks, when I am hoovering, when I am in the kitchen and the washing machine is on, I even used to do it in band practice and had to stop because I was missing my cues (singer). I wonder why i can't hear properly and then I realise I am 'closing' my ears from the inside again. 

Parents

  • Hi! Welcome to the forum. I hope you find it to be a safe and helpful place to discuss things and hear other people's views, I've found it immensely helpful myself. I can relate to so much of what you're saying. I'm a 32 year old female and I was diagnosed at 30, having realised through working in an office for several years that I had difficulties with speech and language processing during conversations and meetings, and with not being able to 'hear'. It did take a while to get a diagnosis. I went through the NHS initially but the waiting list was around a year, so I ended up going privately.

    It did cost, though was less than half of £2,000, and I can honestly say it's a decision I'm extremely happy with. It enabled so much more self-understanding. It is a very personal decision, though, and not everyone may have the same experience. Following it I could make certain adjustments at work, such as always having a 'meeting buddy' to join me in a meeting to field questions and take the lead, having instructions emailed to me, and having places to sit alone to focus, etc. Starting to use noise-cancelling headphones and earplugs was also instantly effective. It's also very helpful to 'manage people's expectations' so that they understand that I'm not ignoring them, but can't hear them or speak at that time and may need to be spoken to more slowly and have things repeated.

    One thing which I think is very important is the 'hearing' aspect. My ears themselves are fine, but I definitely have hearing issues which are related to the brain. I understand exactly what you mean when you say you can 'close' your hearing from the inside. That's what happens to me - I phase out, but I can't control it or force myself to phase back in. When people speak, I usually can't 'hear' them, even though I know that they are talking. I might only catch a few words. Something happens internally, it's definitely a sensory processing issue, and happens with bright light, too. I would often just smile and laugh without understanding what was being said!

    About a month or so ago, I tried out some new hearing technology, and it was life-changing. There have been significant developments recently in hearing tech, and there is something called SINC which is AI-powered Speech In Noise Control. When I tried hearing buds with this, the improvement was instant. My family said that my speech was clear, and I could hear what they were saying to me, because the tech amplifies speech while dimming background sound. On looking into it further, some hearing aids are now incorporating this technology (particularly for auditory processing disorder) and there are audiologists that specialise in APD. This hearing tech was a real game-changer, as I could take part more easily and didn't 'phase out' as much, and had more energy throughout the day. I'd highly recommend trying it!

    Do let me know if you'd like any more info, wishing you all the very best and welcome again

  • in reply to Rach

    Rach,

    thank you so much for your detailed and thoughtful reply, it is really helpful. You have given me much to think about and much I can relate to. I am 38. I was in therapy for 2 years when I was late twenties and I just assumed that any issues left over were just how it was going to be, but while I did manage to overcome mainly self-esteem issues, many issues were untouched by therapy, such as my communication and interpretation with others. I still have to check out socially to not feel overwhelmed.

    I can really relate to the your description of the 'hearing' issue. And it's so worrying that people just think you aren't paying attention. I find I have done the 'ear closing' thing unconsciously and I need to undo it and refocus on what the person is saying. I have mentioned this to both my GP and former psychologist and they had no explanation for it. My therapy was for unrelated issues (childhood sexual abuse). 

    I really think I need to get something to help, I have an antisocial neighbour and I can feel myself on the verge of a meltdown with the noise from her music and TV booming up through my floor. When it interrupts me that's it for the day - I have to shelve any task I was doing that requires concentration (uni work, job apps, reading, etc). It's ruining my life. 

    I'm so happy to hear that you have found something to help with auditory processing. It is positive that this is obviously on the relevant agendas to help people with ASD. 

    Sometimes I feel so stupid that I never considered have these issues before. 2 immediate family members with ASD and a background in mental health and psychology. And I never even considered it. 

    I read somewhere else in this forum that aside from the symptoms of ASD itself, if someone has a history of contact with mental health services they would meet the criteria for assessment. I don't doubt that I needed therapy to overcome issues from the abuse, however many issues were left unaccounted for and I just figured that some things would be lifelong and difficult for me. I have some hope now that maybe there is scope for me to get to a better place, should ASD account for any of these remaining issues.

    Can I ask where you were able to get assessed for under 1000? Most I have seen are around 2000.

  • in reply to Formless

    No problem, I'm really glad it's helpful! I'm so sorry to hear about what happened to you, that must have been extremely difficult for you to go through.

    Have you tried noise-cancelling headphones at all, which help take pressure off your sensory processing and which could help when your neighbour is playing music? You can get them very cheaply second hand, for maybe £20 or £30, e.g. from Computer Exchange. Earplugs can help too, like these ones, and it's not something I realised would help me until I tried them.

    I'm not sure how practical it is but I would also suggest looking into moving to somewhere where it's quiet and calm. I hope you don't mind me suggesting it as it's a big decision, it definitely worked for me though. I think it's so important for home life to be as calm as possible and as much of a safe haven as it can be.

    I would also strongly recommend looking into hearing technology, as when I tried it it helped to prevent the 'check-outs' and the sensory overload. Interestingly, without the background noise I found it easier to notice smaller nuances in people's faces that I would normally miss. If you're curious there's a hearing tech company here that has a section on ASD, and also APD, and it's their earbuds that worked for me. I also find the description of APD by Signia here to be very helpful.

    I was assessed at a private practice in London and found the details through the National Autistic Society directory, there might be some in your area who you could ask about prices.

    I think it's really important to do what is right for you, and to make the adjustments in your life that work for you. Sometimes the smallest daily changes create the biggest and longest-lasting improvements, and things that used to hurt or be difficult can be withstood and made peace with, becoming the turning point for good things to come.

  • in reply to Rach

    It was, but therapy was really helpful to undo all the faulty wiring it had created in my mind, so I am very grateful to have had that opportunity. Yes, I have noise cancelling headphones from rehearsals, I have tried them without playing anything through them and I could still hear the bass from her TV, it actually seemed to enhance it for some reason. And when I need quiet, I need quiet, so listening to music, chants, meditation etc, is a no-go when I'm that stressed. I just need all the noise to stop, you know? Yes, I've also tried ear plugs, it's the only way I can get any sleep, as the slightlest noise wakes me. When her noise is at its worst though, i can still hear it even through the ear plugs. 

    No, I don't mind you mentioning a move. It is the only real solution. I have been trying, but due to the pandemic it is proving complicated and unlikely to happen any time soon. I am pinning all my hopes on the housing officer at the moment, but this is a pattern, and the noise stops after a warning and then it just starts up again. It's crazy-making as you are on tenterhooks waiting for it to start and then crawling out of your skin when it does. Saps the joy out of everything. Home is where you relax and recover, without it, everything is more difficult. I think that's another reason this has all come to a head. There's nowhere to run and so much to do that can't get done. I'm not usually this maudlin. Had high hopes for the future (studying a master's), but it's nigh impossible to work right now.

    Thank you for all the helpful links and the time you've taken again to respond to me, I will definitely check them out. 

Reply
  • in reply to Rach

    It was, but therapy was really helpful to undo all the faulty wiring it had created in my mind, so I am very grateful to have had that opportunity. Yes, I have noise cancelling headphones from rehearsals, I have tried them without playing anything through them and I could still hear the bass from her TV, it actually seemed to enhance it for some reason. And when I need quiet, I need quiet, so listening to music, chants, meditation etc, is a no-go when I'm that stressed. I just need all the noise to stop, you know? Yes, I've also tried ear plugs, it's the only way I can get any sleep, as the slightlest noise wakes me. When her noise is at its worst though, i can still hear it even through the ear plugs. 

    No, I don't mind you mentioning a move. It is the only real solution. I have been trying, but due to the pandemic it is proving complicated and unlikely to happen any time soon. I am pinning all my hopes on the housing officer at the moment, but this is a pattern, and the noise stops after a warning and then it just starts up again. It's crazy-making as you are on tenterhooks waiting for it to start and then crawling out of your skin when it does. Saps the joy out of everything. Home is where you relax and recover, without it, everything is more difficult. I think that's another reason this has all come to a head. There's nowhere to run and so much to do that can't get done. I'm not usually this maudlin. Had high hopes for the future (studying a master's), but it's nigh impossible to work right now.

    Thank you for all the helpful links and the time you've taken again to respond to me, I will definitely check them out. 

Children
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