Question for adult diagnosees

I am an adult female in North Wales who has just been diagnosed  ASD by an NHS psychologist.  I have been promised a written report and was present and included in its creation so I am hopeful!  My GP should also receive a copy.  I'm shocked to read of other people's experiences which seem hugely variable around the country - I feel well supported here with DBT therapy and follow-up appointments.  Personally I suspected the result before it was confirmed after a fair number of tests and interviews.  Obtaining a diagnosis in adulthood is tough but I feel worthwhile and validating.  My advice would be to keep prodding and be persistent, mental health services are hugely overloaded but every individual deserves help and support so don't give up!  I will let you know how long I wait for the "official" report and I agree with others that a summary page would be helpful.

I was diagnosed at the age of 52 last year through the NHS. Between my last of three one hour assessments and actually getting the written diagnosis in the post was 10 weeks! The wait was hell as I was not told verbally either way on that last session so spent those weeks wondering am I or am I not... horrible and very autism-unfriendly. Since getting the diagnosis letter I have had zero follow up from anyone anywhere in the NHS, social services or otherwise...essentially it feels like; yep you're an Aspie now go away you've managed for 50 odd years up to now so whats the problem... I don't think its like this everywhere in the country but don't be surprised if your experience is similar to mine. Good luck and hopefully it will arrive soon.

My report was sent out within a month but to the wrong address even though I had corrected my address on my draft report. Since it was sent out in the beginning of December it was about three months in the end before I chased them and they sent the report to the right address. I had changed GP practice as well so I doubt my GP ever received a copy of the full report.

Hiya :) My adult assessment back in 2016 took about 6-8 weeks for paperwork to actually come through for the 'official' confirmation (after a verbal one). It may vary between counties though ^^; I hope your paperwork comes through soon! 

Hi, I had the same difficulties two years ago when I was diagnosed with Coeliac Disease, it was confirmed over the phone by my GP and I received no consultant letter at all in that two years.  In fact I went back to my GP numerous times until the more sympathetic Doctor gave me a transcript of what the Consultant said to confirm it was Coeliac disease and that's all I have.  However I did get better communication with a diagnosis of ASD but not an 'Asperger's diagnosis.  However there was no follow up at all, I was just left to cope with the diagnosis myself and I had a mental health crisis at the end of April, due to various reasons.  So the first thing I can advise is that your Primary carer is your GP and if things become difficult, hopefully they can support you.  Now I am seeing the 'Mental Health Facilitator' and am on ESA and am thinking of doing voluntary work.  It takes time though to get back on your feet, take care of yourself and set out a simple plan, which helps.

Here in Airedale, Yorkshire, I didn't get my report for a couple of months. I ended up getting my GP to chase them up after finding that it wasn't on my NHS medical records yet when I saw him a few weeks after the assessment.  Like previous posters have said, this was put down to a backlog of administrative work.

Just re-read my report & whilst it briefly mentions ADOS & ADOS-2, there were no formal scores. My assessment was done over two separate sixty minute interviews about three months apart & with different consultants.

The references to ADOS in the report are slightly contradictory in that at one point it mentions a formal ADOS assessment would be beneficial in determining which of my mental health problems relate to ASD, whilst in the next paragraph it talked about ADOS & ADOS-2 results as if they had already taken place.

When at my first interview I joked about whether they were going to make me look at children's picture books, they said I wasn't supposed to have researched the test in advance, but  that they used an adapted version of ADOS for adult assessments anyway.

Whilst I found both of the consultants involved in my assessments very friendly, sympathetic & easy to talk to, I did find the whole process quite vague. I suppose that might be because no-one can really know objectively how they appear to other people & I wasn't sure exactly what they were looking for in my current behaviour, as opposed to anecdotal evidence from my childhood.

Aside from eye-contact which I have always found uncomfortable & far too personal (apart from with romantic partners), I had thought that my mannerisms were otherwise relatively  'normal'. The report references that I repeatedly missed various cues in conversation, used language in an odd way & did not exhibit the normal range of facial expressions.

Rather than being based on any scoring mechanism based on formal tests, my report seems to have been based on direct observation of how I behaved in 1-2-1 conversations, plus anecdotal evidence from both my childhood & adult life.

It was strange, I had always known I was different to almost everyone else & needed to make an effort to appear 'normal', but somehow the assessment both clarified & made me accept just how different!

My letter/report took about three months to arrive. I think a fair amount of the delay was just being typed up by the admin staff at the mental health team. It was about three pages of personal history that I'd given them (so a bit incomplete), plus an ADOS-2 score and a recommendation that my current depression be looked at (a good recommendation to have, but ultimately didn't help get any support). I think I chased the MHT and/or the GP once or twice.

The idea of a 'summary page' is good. I'd agree anyone wanting to see it shouldn't need to know the personal details. It probably is worth asking.

Hi,

I can't tell whereabout in England you live, so I'm not sure how your area handles ASD assessments. I live in North Manchester, where assessments are currently sub-contracted out to a private company based in the South, but who offer services in a few different regional centres.

Whilst I was verbally given my positive diagnosis in early April last year, I didn't receive the formal written report until many months later, sometime in August I think (over a year after the original referral request by my Doctor). I did query why it took so long to compile a written report & was just told they were very busy!

When my report finally arrived though, it was a lot less formal than I had expected & seemed to take the form of a long letter written to my Doctor detailing how the diagnosis was made, & which contained many very personal details. This is probably due to the way sub-contracted referrals for ASD assessments are made though, since technically my Doctor was their client rather than myself.

If you were expecting the report to have some sort of 'Summary Page' just confirming the diagnosis & which could be shown to organisations that you did not necessarily want to know about highly sensitive personal details, then you might need to request this in advance.

If you are much luckier than I was then you might receive your report quite soon, but I wouldn't hold your breath. All joking aside though, I hope it doesn't take too long.

Greetings...

From myself...Not a good answer, though, maybe... yet an answer nonetheless. I myself was Referred in 2012, Assessed in 2013, and got my Report in 2014!

The lesson here is that, as soon as a diagnosis is gained, press for some "Hard Copy" proof, right there upon the spot. Go to wherever you were assessed, and keep asking them; if they genuinely want to help (and if the main Psychologist/Doctor/Assessor is still there), then you can press for at least a "Summary" of your diagnosis. Ask for them by name, and keep asking for either "proof" or "a summary" -- this is to prove that the whole thing happened, at all. (!)

...Sometimes they will report to "your GP" before they report back to yourself. Try asking there, and insist upon gaining Proof. (Gain a copy of what the GP may be looking at.)