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Pre-diagnosis

AC
Hello
I am in the pipeline for an autism diagnosis, however I am yet to hear a response from my local autism service (beyond the initial "here is a questionnaire for you to complete").
I completed the RAADS-R, as requested, and upon doing so, I discovered the scoring for said test - my results seemed rather high (I stopped counting at 130 or so).
In the meantime, I have reached out to a fellow autistic on twitter, who suggested their GP indicated it was fine to self-diagnose as autistic in the interim. My GP interaction comprised a 10-minute phone call, followed by a referral form. 
Recently, and after a lot of reflection, I "came out" at a work do (rather a lot of alcohol was consumed), and the responses were mixed: from the sympathetic "Do you want to come outside? It's a lot quieter... " (It was a very loud, unpalatable environment), to the inevitable "You ain't autistic!", and "Everyone is a little bit autistic!".
Later that evening, someone uttered the phrase "autistic {expletive}", but I cannot be certain of the context - not even sure it was directed toward me, other than I was the one who brought up the a-word at some point earlier in the evening.
I have an employee assistance service through work, but talking to someone - having to start from the beginning - is scaring me significantly, to the point of inaction.
I am married with a couple of teenage children, but things are significantly deteriorating at home. I was effectively told to cover up my anxiety attacks - it is upsetting the kids!
I am an intelligent, normally rational person, but I cannot convince my brain to seek help (beyond the initial GP referral). 
I feel like a fraud.
After a year in my job, I plucked up enough to talk to my boss. He was sympathetic, and they have volunteered to pay for a private diagnosis, but the feelings of fraudulence is overpowering, so I have not taken up their generous offer.
With Christmas looming, my anxiety levels have become less than tolerable.
I need help, but interaction scares me.

  • Hi , I am sorry to hear that you're going through such a challenging time. Our Pre-diagnosis signposts you to some useful support info, including on our Branches: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pre-diagnosis.

    Best wishes,

    Anna

  • Hi, firstly, if your workplace has offered a private diagnosis then take them up on it. Obviously you have told your work colleagues now so that can’t be undone, you will always unfortunately get some strange comments, most of us have had the usual ones. I don’t let them get away with it anymore. Last week I had the “we are all on the spectrum somewhere “ I just explained that, yes everyone has traits but it doesn’t make you autistic. Do you have anyone who you can actually talk to? I’m one year through a two year wait for diagnosis,  I have only one friend, he is brilliant and is really good at just listening, he never judges me. He was the first person I told that I’m autistic. His answer was that he had already thought I was. You might want to let your children in on it all a bit more, my two sons are now in their twenties, my wife and I had a meal with them and I just told them. You shouldn’t have to mask at home, my sons were fine about it all, they could see that I’m not like other dads and obviously have witnessed some of my meltdowns or shutdowns. Realising you are autistic is a big  thing to process, I went into a massive burnout, I’m just coming out of it nearly a year later. I had never missed a day at work and I’m in my 50’s, I am only just starting to have an interest in anything again, trying to process an entire life was too much. Remember that you’re partner is on this ride as well, they are most probably struggling to understand it all, I can honestly say that the realisation of autism has saved my marriage, I knew that I was going to lose everything, home life wasn’t good, you must be totally honest with your partner. It is a huge learning curve. Anxiety does seem to go with the territory, I tend to have a quiet place, I listen to audiobooks with noise reduction earphones and have a weighted blanket, I know it’s a 55 year old man using things that autistic children might use, I’m all the better for it. I have stopped fighting autism, I now embrace it. Get through Christmas, yes it isn’t easy and take up your company’s offer. If you need help over Christmas, use this platform, there are some really helpful people here and no question is not valid.

  • It took 2 years from the forms to the full assessment under the NHS. A private diagnosis would be great as you will know sooner. It doesn't make it any less real. It takes a lot of time under the NHS 

  • I've finally had my NHS diagnosis after more than two years on the waiting list.  I was literally throwing up with anxiety the week of the assessment, panicking about what would happen if they said I didn't have it.  Or if they said I did.  I was still questioning at this point whether I was making it up, in spite of scoring very highly on all the tests.

    I would take up the offer for private assessment if it's still available.  They wouldn't have offered if they didn't think it was worth investigating.  And your scores suggest that it is.

    I've found it's pretty much impossible to ask things like this in person or on the phone, but I can send an email.  Still stressful, but at least I can write my thoughts in my own time. 

    I understand how you feel, and I hope you find a way forward.

  • All my lovely formatting has disappeared :'(