Waiting times for report after assessment

Hi,

I can tell you that it took about 3 weeks for my Adult Autism Assessment Report to get through to the GP. Five months is definitely not normal and I think you should follow it up ASAP.

I think it's important we share stories.  It's certainly not a competition and your experience may well help me in some ways and so on. I've been lucky that I was recently allocated a counsellor who is autistic themself and we've been able to chat about many things such as thinking patterns, understanding of the world and everything else that's been beneficial to my understanding of myself.  Now it's 'official' I'll feel a little less of a fraud.  

Thanks for the links.  I'll have a look through. 

I am really pleased to hear that you have now heard about the outcome of your assessment (it seemed a very long time for someone to have to wait for their important news).

Sorry to understand that it has taken decades for this point to be reached - many here, me too, have shared similar decades of lengthy journeys to reach our Autism understanding.  (This is not a comment offered to in any way diminish the impact of your own personal journey - rather, it is to demonstrate an example of the Autistic style of "love language" - as we tend to share our stories to demonstrate our solidarity - it is not a competitive concept - it is part of how we try to show you have been heard / seen / understood).

It can feel a long path to that knowledge - and it is not easy to find people in our real world community who actually "get it".  However, I hope you will feel, here on the forum, that you are among people who really do get it.

If you can focus well on the sense on the weight being lifted, (my own version of that is: "and now I know why"), it can be very helpful - as you slowly start to absorb your news.

Do take it easy on yourself - as it can seem a lot to process (no rush is required).

Best wishes.

Congratulations!

What describe feeling is normal, so please don't worry - I've linked to an article below about this. You might also find yourself feeling more aware of your traits, which would also be normal. For me, it was a journey of learning and adapting after my diagnosis, and it was important to pace and be kind with myself - especially at the beginning.  

The NAS has a great set of articles focused on "after diagnosis" that you might find helpful while you're waiting for your report and follow-up appointment.

NAS - How you might feel after a diagnosis - includes perspectives from other autistics

NAS - Other advice covering post-diagnosis - including:

• Talking about and disclosing your autism diagnosis
• Emotional support for family members after a diagnosis
• Formal support following an autism diagnosis
• What can I do if formal support is not offered or is not enough

Therapy (or counselling) is often recommended after a diagnosis. If you prefer, depending on where you are in the UK, you may instead be able to self refer for talking therapy on the NHS. 

Before arranging it, you might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

The Autistic Survival Guide to Therapy

Finally, I'll just mention a couple of books that I and others have found helpful early on in our post-diagnosis journeys:

Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

How to Be Autistic (free download currently available via this page)

An update as I hate to leave unresolved! 

I had an appointment earlier where I was given the outcome of the assessment.  To my astonishment I was told that I do meet the diagnostic threshold and officially am autistic.   Just waiting now on a formal appointment to go be given the full report and discuss what it means and what, if anything happens next (I'm guessing there will be something as I've been recently under the crisis team again).  

Currently feeling a bit numb and certainly still processing it as I may be a while.  There is sense of anger though, that it's taken decades to reach this point but at the same time, there is a sense of a weight being lifted. 

Thank you all for your time and advice.  

 gerald_hosepipe sorry to hear about your wait

5 months is not normal for a report - my recent ADHD report I was told 6-8 weeks but even then I was given an indication of the outcome at the end of the assessment. Even though I knew the result even the 4-5 wks waiting was bad enough so understand how difficult this wait is for you.

It's not fair for the assessors to put your through this wait.  Please chase - I'm not sure if you can even ask your GP to chase on your behalf so maybe ask them.

Good luck - and if the assessment isn't the diagnosis you expecte, then hopefully at least they say where they think you dont meet the criteria and perhaps you can challenge.

There's been others on this forum - who didn't get diagnosed until they had a second assessment, this may apply to you.  So wish you well

Hi and welcome to the community. 

gerald_hosepipe said:

So, when it comes back negative, am I able to request a second opinion or should I just look to book a private assessment now? 

If that happens and - having read the report - you're still unhappy with their decision, the NAS explains your options here:

"If you disagree with the outcome of the assessment, you may want to raise your concerns directly with the team of professionals who assessed you. You can consider requesting a second opinion by going to your GP if you have had an assessment through the NHS.

It may also be possible to pay for an independent assessment. You can find out more about independent assessments on our How to request an autism assessment page.

If you still have concerns about the outcome, there may be further action you can take. You can find information about this on our page What to do if formal support is not offered or provided."

From: NAS - What happens during an autism assessment > Assessment results and report

That's a fair point!.  I'll ask what they will / won't accept. 

It was all through the CMHT team - no GP involvement.  I was initially told to self refer by the doctor linked to the crisis team / pysch ward and then my care co-ordinator picked it up at some point.  I'm not sure the GP is even aware as there seems to be a disconnect between the two services. 

I feel your frustration 

They keep trying to call me and I keep asking them to email me I was non verbal, not telling me why you want me to call isn't going to get me to call,

Bluelyn said:

I swore some of this is a test,

I thought that with filling out the self-referral form 

The instructions were unclear, I was sent 2 different versions of the form, including the same outdated form twice, the mention of the digital form being available online had no link and I couldn't find it on the website, when I finally got the digital version the fonts inconsistent as you typed and the layout didn't adjust properly when filling it out, there were 2 different deadlines provided in one of the confirmation letters, ...

I got so frustrated with it I almost re-built the forms for them. In the end I think I just put it in the other comments section that the ambiguity in the process and issues with the form caused me a lot of stress.

On your question about private assessment, I had a private assessment in 2023, my CMHT wouldn't accept it and said I had to have again, which I had last month, I. Meantime they discharged me saying autism and autism services will not accept me 

So before spending money make sure it will be accepted 

And your GP have they chased it up 

It makes me angry that they don't open up support that might help because you don't have a diagnosis and then think 5 months and not providing the diagnosis is acceptable, surely if the report hasn't been provided by now they are not going to remember everything, it's a huge failure 

And trying to find a private service to help is also near impossible 

This makes me very angry and so much emotions

For mine, the main assessor for that team / area was present along with the trainee who had carried out a pre-assessment chat about a 6 weeks beforehand (just asking how I would feel if I was diagnosed, what I hoped to gain from it etc).  That chat lasted longer than the actual assessment. 

I appreciate they are under the cosh and know that I was lucky to jump the queue slightly (they were looking to clear the backlog of individuals who are under the CMHT etc teams) but it still took almost 2 years to be told I was going to be assessed and a further 12 months to actually have the assessment itself.   I guess 5 months is nothing really but at the same time I feel like everything is on hold as nothing will progress until this report is issued. It's just like being in limbo for nearly 18 months and its starting to get to me again.  

Olivia 

Thanks for the signposting - I'll have a read.  

If a second opinion says the same thing, then so be it. I think my main concern is that it was such a short assessment compared to what others have seemed to experience.  

Have chased up regularly just get told it's being finalised.  

I was told it would take 4 weeks for my report, next Tuesday will be 4 weeks and if it doesn't arrive on Tuesday I'm going to get ready agitated 

I swore some of this is a test,

Have you chased it up?

Hi, sorry you have been waiting so long, 5 months does seem a bit excessive.
I had an NHS assessment last June, to be honest two people normally carry out the assessment, I think I had a language specialist and an autism specialist present, I was their appointment for that whole day. I was given the result at the end of the day and received the written report 3 days later. I’m now  58, the whole process was done with no parental input.

Dear gerald_hosepipe,

This sounds like a difficult assessment for you to go through, and I am sorry to hear it has taken so long to get your report back. It could be worth contacting the local team to see if they can speed up getting the report back due to the distress it is causing. 

I have signposted some of our resources below that may be helpful to take a look at:
Assessment and diagnosis

Seeking help with mental health - as you mentioned spending time as an inpatient recently I have included this information in case it is helpful

I have also copied and pasted information regarding second opinions from What happens during an autism assessment - NHS

If you do not agree with the result

When you get the report, you may:

• be told you or your child are not autistic
• be asked to wait until your child is a bit older to be assessed again, as the signs of autism may not be clear
• be given a diagnosis you do not agree with, such as a learning disability

Ask the assessment team why they have made the diagnosis they have.

The assessment team might arrange for a second opinion from a different team.

If you still do not agree, you can ask the GP to refer you to another team for a second opinion. Or you can pay for another assessment by a professional you choose who works outside the NHS (privately).

Remember that a second opinion may say the same thing.

I hope this is helpful.

Best wishes,

Olivia Mod