The diagnosis process

Do not worry about the assessment, I have had three sessions of which one was a nurse for two hours (nearer three in the end) and two with a Mental Health Doctor/Specialist.  Because I have no close family then they cannot be asked but it was quite informal recounting history, etc.  This gave me a status where I was diagnosed as High Probability of Autism. That is enough for some recognition by employers/etc.

I am awaiting for Adult Test on the NHS which is a long waiting game but if you have fixations with things (you research it as you are on here) then you hare probably on the spectrum.   The NHS test, as I understand, is a series/batch of meetings/test to get a full diagnosis.

I wish it was a standard process or at least that staff would explain beforehand what is going to happen, how long it will take, how the results will be conveyed and what sources of post-diagnostic support are available.  I honestly thought there'd be national and professional guidelines on this so I'm quite dismayed at it all.

That said, both my own and my son's assessments followed the same process, although min took considerably longer (mine was NHS and because of the extremely long wait we paid for our son to have it done privately).  The process was questionnaires first, a 1 1/2 hour screening interview which dealt with reasons for seeking an assessment and general background, a questionnaire-driven 2 1/2 hour appointment to take a full case history, taking in info from a parent or someone who knew the person in childhood (particularly aroudn the age of 5 for some reason), then finally the ADOS-4 test  (which in my son's case was filmed).  This all then went to a multi-disciplinary meeting for the final decision to be made, followed by a diagnostic appointment (in my case I got an A4 diagnostic letter, my son got a detailed report including a list of possible avenues for follow-up or post diagnostic support).  

So from our experience it sounds as though you'll still have the ADOS-4 to do.  i would advise calling them to ask about the process just to put your mind at rest.  However, i have to say that our phone calls were rarely returned and, when they were, it was weeks if not months later!  To me the process seems particularly gruelling for those on the spectrum so i put in a complaint to the CCG and also responded to their invitation for comments to feed into a review of the service.  Obviously i've not heard anything back from that either!

If only it could be more straightforward and easily accessed! 

I have assessment appt 3 coming up soon but no idea (haven’t been told what the plan is). Appt 1.., general info and why I asked to be referred. Appt 2... developmental history, childhood, friendships and relationships etc

they have my RADS score, EQ test, AQ test..I filled in all the paperwork, gave them school reports...

not sure if they will do an ADOS cat 4 test or just let me know findings? Eek

Hi Ian

I have just been diagnosed with ASD at the age of 58. I had an idea that I might be autistic some time ago but ending up discounting this as GPs I mentioned it to always disagreed with me.

The ASD assessment process varies quite a lot. The psychologists who did mine gave me an outline of the questionnaires and sessions they planned to use. I was told that they might need to arrange a session with a speech and language therapist, or carry out a cognitive assessment, but after my initial assessment it was decided neither of these would be needed.

I had two sessions with one psychologist covering my social development and life story, and a separate ADOS assessment with two different psychologists. In addition a number of questionnaires were completed by me, my parents and my siblings. My husband also provided some information covering our time together.

There was a delay before I got my diagnosis because a multi-disciplinary formulation meeting was held to decide if I met the criteria for ASD diagnosis and what the most helpful recommendations would be. I got my diagnosis at a feedback meeting with one of the psychologists. This was very helpful as my husband attended for the second part of the meeting and we were both given good advice and suggestions.

I was extremely anxious throughout the process. I now realise I could have allayed some of my anxiety by asking the psychologists for more information. I am sure if you ask for more information about how your assessment day will be structured they will provide it. As others have mentioned they may not go into too much detail about any tests they plan to use as those are supposed to be done 'unseen'.

Very best wishes,

Rose

I'm a teacher, 40s, recently diagnosed. I began to realise I probably was autistic at some training a few years back.

My appt was a single half day with 1 psych, and the "chat" type. I had also probably done most of the online tests before hand as well.

Since being diagnosed ,I do sometimes have the "really? am i?" moments eg when I read things others say that i don't think really apply to me, or i don't feel I struggle as much as others do. 

But it's called a spectrum for a reason,and if a highly trained professional has diagnosed me as being on it, then I'm on it! (and happy I am!)

Hello Lone warrior, and thank you for your response! I am pretty certain I am on the spectrum, like you say, if I've made it this far into the diagnostic process, they are more interested in where abouts on the spectrum I fall. Do you agree? I think that now I have the appointment date through, my lack of convidence is making all the what if questions come forefront. It is difficult, the waiting I mean. It is having that "piece of paper", that will help explain they way I am, the way I think, the way I act. It will give me the opportunity to understand fully who I am if that makes sense. I guess it is my my little querks that is making me think this way. Patience has always been a test of mine. Thank you for the virtual aspie hug ( )

Ian

Hi Ian and welcome aboard, there are quite a few teachers and teacher assistants here that are autistic, often having worked with children of various ages who are also autistic, 

It is often only when reaching a certain age that ability to cope begins to show, the age range varies enormously but as pressure to do more or achieve more starts to pile up things become to much.

I am not formally diagnosed as yet, I have been part of this community for about eighteen months now, it is where I come to be with good people who I understand and they me.

I hope things go well during the diagnosis process, many say it isn’t an interrogation as there is no pass or fail mark, if you have reached this far without being dismissed as having something other then the chances are they already think you are on the spectrum, 

stuck around and enjoy learning all about the good and bad bits about being autistic, as for “what if i’m Not actually autistic?” The label doesn’t change the person inside wether it be autism or anything else, if anything once the initial thought has time to sink in you may well start going over everything that has happened in your life that could maybe have been different.

For some it’s a blessing as it helps understand that the way we are isn’t wrong as we may well have been made to think, but just wonderfully different. 

Anyway enjoy your time here, and be kind to yourself. 

Free complimentary virtual aspie hug ( )

Thank you so much for replying! I always research everything I am involved with, including the tests they might use. I think my tendancies tend to run me this way. It has been a while since i was ffirst referred (11 moths ago for my first phonecall, nearly 9 months ago was my first appointment). I have even completed the autistic quotent test in which I scored very highly (42 out of 50), which put my head i a bit of a spin because, here at 40, I've kinda done ok up til the last year or so. What is more on my mind, more than anything is what if i'm not actually autistic.. sounds daft i know. Thanks again for the response!

The assessment process seems to vary, a lot of adult assessments still seem to use strange storybook based questions that seem more appropriate for young children, whereas for others (including myself) it was more like an informal chat.

In my case, I was only diagnosed early last year at age 55 & possibly the reason I avoided the storybook nonsense was that I made a joke about having read up online about what the assessment might be like & hoped that I wouldn't be asked to make up silly stories about frogs on lilypads. The assessor said I shouldn't really have tried to read up in advance, to which I said I was in my fifties & automatically research everything on the internet. After that though, she said they didn't need to use that material & could do the assessment more informally.

My assessment actually took two seperate appointments, not because talking about frogs would have made things easier, rather that having had a lifetime to learn how to mask most of my symptoms, I was harder to diagnose. As long as you will be happy with the result one way or the other, I don't think the assessment itself is anything to worry about, as it isn't an interrogation like those awful DWP assessments, they just genuinely want to help.

Congratulations on getting an assessment so quickly though, for me the entire process took almost a year, but for others it was even longer.