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Diagnosed ASD yesterday

Dawn

I've been quiet on the forum over the past couple of months, but life is starting to settle down and I look forward to participating more now.

I did want to say a public word of thanks though to the many of you who answered so many questions for me when I was first reeling from the shock that there was a possibility I was on the spectrum a few months ago.  I have learned so much from you all.

So, big update:  I am autistic.  I was assessed and diagnosed yesterday at the Lorna Wing Centre.  For anyone waiting for an assessment there.  They are lovely and will put you at ease.  They are also VERY thorough and you can have complete confidence that whatever is there, they will find.  

Even though something in me knew what the outcome would be, I had prepared myself for a response that said I didn't hit all of the criteria or perhaps that I had some different problem but with a big sensory processing issue. But I was right.  I am autistic and I'm delighted with the diagnosis.

I feel now I can relax into and enjoy the all the good stuff that comes with the terrain.  I'm just praying that the services can now help me with the things that aren't so good - actually in my case potentially life threatening, as all those sensory difficulties lie behind medical and body phobias that make it so difficult to treat me for anything.

I began this year in very deep psychological distress because of medical treatment and the total failure of the medical profession or mental health services to understand what I was going through with consequent dismissiveness and other attitudes making it worse.  And of course, the worst distress of all for me is that I just didn't understand why I was going into meltdown after meltdown because of it.  I didn't know what was happening to me.

I do NOW and it makes perfect sense and THAT is half the battle to feeling better.  The rest will come when the medical professionals wrap their heads around the problem too.

Relieved and delighted as I am, I am sad and more than a little cross however that no one I dealt with ever considered that there might be a reason none of the so-called MH therapies were working and that perhaps I wasn't just an unco-operative patient who didn't want to get better.  I am where I am because I researched and researched online, considering every psychological disorder in the book - nothing fit - until I read the NAS descriptor of a melt down and worked it out from there.  I've had to pursue the diagnosis myself and pay because my problem is too urgent to wait two years on an NHS list.  I am not just sad and cross for me, I am sad and cross for the many out there who might not have the skill to research their own problems and who are left dumped in an uncaring mental health system with no support, or who can research it but can't afford to pay for an assessment or convince anybody they need an assessment.

Good luck to all of you out there who are currently still waiting for an assessment, whether your answer is autism or something else which gets you on the road to the help you need.  I wish you all the very best and thank you so much to the many who were there for me.

Parents

  • Hi Dawn,

    It's really good that you understand everything now.  I remember you mentioning your medical phobias before, but it sounds like the assessment helped to clarify that they were all due to sensory issues and that you were having autistic meltdowns.

    I'm really glad that the diagnosis went so well, and that your experience was so positive!

    I too feel really sad and angry when I read about situations where people have waited years for an assessment and then not been believed.  It's really upsetting that many people, especially women, aren't diagnosed until late in life, if they are diagnosed at all.  I really hope that things improve....

    My assessment at the Lorna Wing Centre is going to be probably between March and May, they told me.  I'm trying not to think about it too much, or read too many diagnosis stories.  I really hope that I get a diagnosis, because I'm pretty sure by now that I'm autistic.  But I've decided that if they tell me I'm not, I will go somewhere else for a second opinion.

  • in reply to Ultramarine

    The problem with MH services is that they don't have the training to recognise it. It had never occurred to me that I could be autistic at that point. In fact, I'd have thought anyone were mad for suggesting it; I'm good at drama, a qualified trainer and a linguist. My beef with them is that when their therapies for NTs were failing and they were dismissing my meltdowns as panic attacks, they just concluded I didn't want to get better and put me in the bin. Even when in suicidal crisis they would there after deal with an urgent GP referral by telling me to phone the Samaritans. To my mind, they should have kept investigating in the face of failing treatment, not just decided I was unworthy of care.

    Only my own research put me on the path to the truth.

    As for your upcoming assessment...honestly, you'll be in the best possible hands with them. Don't worry about what you have or haven't researched before hand. I was really up front with them about what I'd been reading. To be honest I was really up front about everything; both the things I thought argued for autism and the things I thought argued against. I just wanted the truth.

    They are very, VERY expert in female and more subtle presentations. Just open right up and tell them everything. They are really easy to talk to. They were lovely. I really felt listened to for the first time. Good luck with it.

  • in reply to Dawn

    Thanks, Dawn!  I really hope that medical professionals will become more aware about autism and sensory issues.  It's scary to think that they don't understand about issues that affect so many people.  There have been several celebrities coming out as autistic recently, and I really hope that things will change.  I was at my local supermarket this week and I saw a sign saying that they were introducing quiet hours on two mornings of the week, where they will dim the lights and reduce the noise.  They didn't say specifically that it was for autistic people, but it sounds like this is who it was for.  It sounds like more and more people are becoming more aware of what autism is.

    What you went through with doctors before sounds really upsetting and frustrating, and I'm sure it's a great relief to have the diagnosis now.  

    I've suspected that I might be autistic for many years.  I told a therapist about it a few years ago (maybe around 2017 or 18) and asked her if she thought I was autistic, and she said she could tell straight away that I wasn't.  I believed her because she was a professional, and I assumed she would know, so I thought I wasn't autistic.  But recently I had therapy again (both times were on the NHS) and this therapist didn't dismiss me at all, and she said she had worked with other people on the spectrum.  So it does seem like things are changing at the moment.

  • in reply to Ultramarine

    Bless you. Of course you have feelings. We have s**t load of them. Good friend of mine from University days messaged me tonight saying I was dripping with empathy for her in times of need. We love. We feel everything. We just don't always read emotion very well and don't always display ours in ways people expect or understand. It's about difficulty in recognising and communicating emotion not feeling it. For me at least, once someone verbalize what they feel and need from me, I'm all theirs. I just might not twig on before that. Folks just need to explicitly tell me. 

  • in reply to Dawn

    Thanks, Dawn.  I'm really encouraged from hearing about your experience this week.

    The last therapist actually told me she agreed that I was autistic, even though she wasn't a specialist.  She said it was because I had a "lack of affect" in my voice and facial expressions, even when I was talking about distressing things.  We had video appointments so I could see myself talking, and I realised she was right.  I do sound a bit monotone, but it's NOT that I don't have feelings! I feel things deeply but I just don't show it on the outside.

Reply
  • in reply to Dawn

    Thanks, Dawn.  I'm really encouraged from hearing about your experience this week.

    The last therapist actually told me she agreed that I was autistic, even though she wasn't a specialist.  She said it was because I had a "lack of affect" in my voice and facial expressions, even when I was talking about distressing things.  We had video appointments so I could see myself talking, and I realised she was right.  I do sound a bit monotone, but it's NOT that I don't have feelings! I feel things deeply but I just don't show it on the outside.

Children
  • in reply to Ultramarine

    Bless you. Of course you have feelings. We have s**t load of them. Good friend of mine from University days messaged me tonight saying I was dripping with empathy for her in times of need. We love. We feel everything. We just don't always read emotion very well and don't always display ours in ways people expect or understand. It's about difficulty in recognising and communicating emotion not feeling it. For me at least, once someone verbalize what they feel and need from me, I'm all theirs. I just might not twig on before that. Folks just need to explicitly tell me.