Looking for experiences of UK autism assessments

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Hi! I am very early in the adult diagnostic process for autism but I know that I've been accepted for an assessment. I just sent the consent form for it off yesterday.

My question is: what should I expect at the assessment? I have been told it's a 12-month wait so I have a while yet but because I'm me, I'm still worrying now lol. My anxiety is definitely getting ramped up about it so I just want to know what to expect. How should I prepare? What sort of things do they ask? On average, how long will it be? Will I be allowed to keep my mum with me the whole time or will she have to speak to them separately? I get very, very nervous when by myself around strangers, especially professionals. I hate it and I risk a panic attack when it happens. My mum has been like my comfort blanket at important appointments for a while now. I can't even go to our GP by myself.

Hi

I had my assessment for autism in the UK yesterday (still taking it in). So I thought I'd reply to you as my first post here

I was told I'd have to wait 12 months but it was 10 months. So a long wait but worth it. Answered a few questions for me. I prepared by thinking of situations or events in my life that, for whatever reason, didn't make sense to me or didn't get the reaction I expected. With mine, they asked a lot of questions and it lasted for a number of hours. But I expect it would be different for everyone. My wife came with me, she was able to offer a different angle to things and to add to the answers I had given.

The main thing to remember is that they are there to help. They said we can stop when you like, adjust the lighting and feel free to get up and walk around if I feel like it. I was nervous due to past experiences I'd had with doctors but I'm glad I did it.

Hope this helps.

The thing is, there's no standard assessment so they can all be a bit different.

In a general way though, it usually consists of a couple of appointments (seems to range from 1 long one to up to 3 shorter ones) and it will involve an interview with you and often an interview with your parent. You might be asked to fill in some questionnaires as part of the assessment and you might be given a test called the ADOS-2, which is a series of little tests like doing a really easy puzzle and reading a story from a picture book. You might see people complain about it seeming useless and childish because the tasks themselves are a little silly, but they're not really the point (i.e. they don't want to know if you can do a puzzle and tell a kid's story, they just use those to see how you'll interact). It depends where you've been referred, but you could be seen by a psychologist, psychiatrist, occupational or speech therapist or a combination of a few people. Sometimes you might get told whether you do or don't have autism right after the end of the assessments, or sometimes you might have to wait for your case to be presented to a 'panel' to make the decision. You almost certainly will not have a battery of cognitive tests or an IQ test like they often do in the US.

I just got diagnosed after a 9-10 month wait. My mum got a questionnaire first (I think if she didn't live abroad, she'd have had an appointment to talk about me instead), then I got one when I finally got my appointment date that I had to fill in and send back. I had two appointments of about 90 minutes; the first one was doing the ADOS-2. There was a bit in that where we talked about emotions (e.g. what does feeling anxious feel like?) and relationships (e.g. describe what a friend is). The second one we talked about routines and interests and what I was like as a child. I didn't always remember stuff from when I was a kid, but that was fine.Then I waited in a waiting room for a few minutes, and then I got called in and was told I met the criteria for a diagnosis.

You really don't have to do anything to prepare, except to try and just be yourself. You could write down a list of traits or examples if you wanted to to hand in to them, perhaps if you're worried you won't remember to mention certain things, but it is not a requirement.

UK assessment services seem to be quite variable depending on age and location.

I was assessed by Cumbria Adult Autism Services not long after the service had been set up. I still had to wait about a year for an assessment. I was somewhat older than you as I was assessed in my fifties.

I had to fill in a couple of quite lengthy questionnaires, one for my GP, and another for the assessment centre shortly before my appointment as well as some other paperwork. I also sent them a lot of additional detail in the form of a personal report.

My assessment itself was carried out at a single and rather lengthy appointment. My ex partner came with me. There were no tests during the assessment, perhaps due to my age? It was just a very long interview basically. My ex partner was present for the first part and was then interviewed separately.

The assessment was carried out by two clinical psychologists. Having had a couple of bad experiences previously at the hands of psychiatrists I was very anxious about the whole process. However, both clinicians were very friendly although the length of the assessment still made it somewhat stressful.

I then had to wait several weeks whilst my case was discussed by the multi disciplinary team before I was offered another appointment to discuss their findings. This appointment was very short as I was just given the results of the assessment and there was no discussion necessary.

I was then offered a further appointment with one of the assessors during which we had a discussion about what sort of things might help me to improve my life. After this final appointment I was sent a report which I could give to my employer if I thought it would be helpful.

It was made clear to me throughout the process that there wasn't really any support available for autistic adults beyond the assessment, other than the normal therapy sessions available to anyone. They did not refer me for any therapy but simply left it up to me as to whether I wanted to use the service. As yet I haven't done so.

Although the whole process was somewhat lengthy and stressful, I'm glad that I went through with it, and my life is slowly but steadily improving as a result.

In my case, all it consisted of was observation of how I interacted in various social situations, along with interviews with a psychiatrist and psychologist, who also interviewed my parents, paternal grandparents and sister. You should also expect an IQ test, usually WAIS, to be administered; this is because a disparity between general functioning IQ and verbal IQ, usually with the latter being somewhat higher (in my case, 118 versus 132) is a commonly observed feature of the Asperger's repertoire of abilities. I was formally diagnosed less than a month after the process began.

As others have said, the process and the waiting times are very much a "postcode lottery". Before I mention my assessment, my first piece of advice would be to see if you can get hold of more localised information. You might find someone in your area on one of the UK autism forums (e.g. the National Autistic Society), for example, or there might be a local autism meet-up group or charity where there would be people you could ask. Your local patient liaison groups (PALS) or district HealthWatch organisation might be worth a try, too (our local HealthWatch has been keeping a close eye on our local council's poor implementation of the Autism Act legislation.)

My wait was about 6 months, but, very fortunately, my GP got me onto the waiting list just as a new NHS unit had been set up; the waiting list for them is now nearly three years (this is in the Bradford/Airedale district of West Yorkshire). My assessment was done in four sessions of about an hour, mostly by the same psychologist, though their occupational therapist was invited in to assess my executive and sensory functions in more detail. My Mum was interviewed by post to get extra information about my childhood.

Once I got over the initial nerves, I actually enjoyed the process. It was the first time I'd ever spoken to someone who saw beneath my anxiety and depression, and who really took my underlying difficulties seriously and seemed to have a clue what they might mean (previous psychologists and counsellors had always seemed to be missing the point somehow.)

OTOH, a friend who was also diagnosed about the same time as me, living in the same village and referred by the same GP surgery, was diagnosed in a single session, and with no family involvement. His GP had got CCG funding to send him to a different, non-NHS unit in the same area. He was diagnosed with "Aperger's Syndrome", and I was diagnosed with "Autistic Spectrum Condition", which indicates that our respective assessors weren't even using the same diagnostic manuals!

My experience last summer:
I paid to go private as the NHS waiting list was 2 years
I had one single 4hr appt with one clinical psychologist with no family involvement.
Diagnosis of Asperger's syndrome made on the day.
T

^ My situation was very much like Bagpuss7.
No adult diagnostic service in my area so I paid for a private consultation/assessment in another city. I arrived with self-compiled tests to see the clinical psychologist who had 30+years NHS diagnostic experience, so I trusted the outcome.

My appointment lasted a couple of hours and she told me on the day I had Asperger's and she then asked if I wanted further help privately, as there would be none available on the NHS.

It took about 4 months from being referred to have the 1st assessment. I had my stepdaughter with me and my sister provided an email which my stepdaughter printed out and brought to the assessment. At the end of the 1st assessment I was given some questionnaires to do and bring to the second assessment. My stepdaughter was given something to fill in too.
My 3rd assessment is tomorrow.

Thanks for all the responses! I live in Wales and we have Integrated Autism Services here for each individual area so that's who will be assessing me. It's on the NHS.

I'm really grateful to be living in a place that has adult diagnostic assessments on the NHS. I could never afford to pay for it. I was referred by my GP back in December and since then, have got a letter back, been to an autism drop in session with 2 people that work for the service, and sent off my consent form. Just the drop in session was scary enough. I know that the assessment will make me so anxious. I already have been diagnosed with Social Anxiety Disorder about 6 years ago so I'm really not good with these things.

I would like to get it done in one day but I do feel like it might be less overwhelming if I were to have smaller appointments, I don't know. I'm not great at remembering things and putting my thoughts into coherent sentences so I think I will write down the reasons that we think I could be autistic. I am much better at writing and typing than I am actually speaking to people.

My mum has thought I could be autistic since I was a child but I always shut down the idea until recently when I actually researched it. I wish I hadn't shut it down so quickly now because I am pretty positive she's right now. Now, I have to put myself through this assessment at an age where I'm much more aware and anxious than I would have been. I have always struggled with socialising issues but repeated failures made me develop my actual mental illness around it, I think. If I had gone through this when I was younger, it would have been better but oh well. Can't change the past. My issues have affected my life greatly so I need to know. Maybe then, I can actually get the appropriate help. We'll see.

I was assessed during my sectioning (for social phobia and depression) under the Mental Health Act 1983 in 2011. As I recall it didn't take any longer than a month or two after the assessment for the diagnosis to come through. I suppose, given the situation, it was a more 'pressing' case than usual.

I was diagnosed at the end of last year. My process was quick from start to finish (compared to lots of areas), but very thorough.

To be considered for referral in my area you have to show that you had not previously been through a diagnosis process, the condition had been present from childhood and a threshold score of 6 or greater on the AQ-10 test. I went to my GP with a printout of the process, showed the evidence of each point as well as a 2 page list of some of my traits, behaviors and how it impacts my life. Funding existed for adult assessment and within 6 weeks I had my NHS approved assessment and was diagnosed.

Prior to my assessment I was sent a very long questionnaire which I completed. The assessment process was a few hours of discussing this questionnaire and my life. I took a letter from my wife about her views of me and how my behaviors impact her, my kids and our family life.

I received my result on the same day as my assessment.

Reading what others have said about waits, I was very fortunate and I can only assume it is due to a postcode lottery with funding.

If I'm being honest though, I significantly helped myself out. I had a highlighted printout of the referral criteria and proof I met it - they could not deny me a referral. I had already given significant evidence prior to a pre-screening questionnaire being sent out and the sheer amount of information I included in the questionnaire (20 pages of A4) and my wifes letter gave them more than enough. I also took printouts of the results of every online test I had done, all of which showed I was vastly over any thresholds.

My advice; don't just rely on the therapist. Some are better than others. You have sought a diagnosis for a reason, something(s) are giving you reason to believe you are autistic - you know yourself better than they do. Prepare, prepare, prepare. Make notes about everything that you can think of about your traits and why you think you are autistic, if you have people in your life that are close to you and can also provide their view on you then get them to wright letters or notes for you to take. Once the therapist(s) get you talking they can usually see it pretty well, but the more evidence you have the better; they can't take a blood test and diagnose you, they can only go off that snapshot they see in front of them and use their experience to make that call.

.....and try not to panic. They are not trying to catch you out, they are trying to help you.


Following my assessment and result I was offered post diagnostic support sessions - which I haven't taken them up on. It's not something I need, I function at a level that (with my already established coping mechanisms) allow me to lead a relatively "normal" life - to the outside world at least.

Hello, I took my assessment about five years ago in England. I think I waited 6 to 12 months for it. First of all it is absolutely nothing to worry about. I had to go to the psychology clinic three or four times, once for a long “Aspie test”. I was allowed to turn the lights off for this. I think I was asked some verbal questions as well. Other visits were about other tests like the picture book story and recognising facial expressions. My wife went with me at least once as they wanted her input as well. I think they would have been happy for her to attend every time. Finally they rang an uncle for his input as he was the only family member left who was willing to talk to them about my childhood. (I was 57 at the time).
I also get very anxious about stuff, even now, don’t we all? It’s an Aspie trait. I’ll say it again, doing the assessment is nothing to worry about. No preparation is needed, I would say. Just be you.