What is the assessment process for Aspergers?

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Hi. I am going to see a mental health team soon to have an assessment. What do you think they will do? Does anyone have the experience of it?

Hi Robdemanc,
I suspect most (even all) of us here who have been formally diagnosed will have some experience of the system, but as the process may vary according to how services are provided in your particular region, it would probably help a bit to know where you are. I am in the United Kingdom, so can tell you about that, if relevant.

I would also like to know what the assessment involves. I am going to be assessed soon.

I once was told I would be assessed in the past and met a Consultant Psychiatrist. But the appointment was only given a 30min time slot and I wondered what could be done in that time. I was sorely let down, because the psychiatrist talked only about depression and when I asked about AS, he said he was no expert in that. Because I didn't seem depressed that day, I got referred out of the system, and had to begin again.

Now though, I have assessment in the pipe line, so to speak. The letter I have received says they will assess according to the following things:

1. ADOS (Autism Diagnosis Observation Schedule)
2. DSm-IV-TR (Fourth Edition) diagnostic criteria.
3. Social responsiveness Scale (SRS)
4. Developmental History Questionnaire.
5. Clinical Experience.

I've googled some of these and found some info, but on the other hand, I don't want to 'revise' for it, as though it was an exam, because I want to get an objective and unbiased result.

Hello again CocoRock.

I am about to explain things as they happened to me - I hope I am correct in what I say, but I do only speak from my personal understanding.

I can see from something you said elsewhere about the the Hoffman Inst. That you probably live in the UK.

Any assessment needs to be by a properly qualified person trained in ASD matters. You should find that you are asked to complete 2 questionnaires in advice of your meeting. The formal, face-to-face, process will take approx three hours and you will be asked to bring 'someone who knows you well' with you. That person is there to give the doctors their view of how you behave, etc.

I think you are an adult and therefore only module 4 ADOS would be relevant.

Most doctors (certainly the NHS) use the WHO's International Classification of Diseases (ICD) as their basis for a diagnosis. The criteria are similar to DSM-IV but you should be aware that there are some planned changes in the DSM and that version 5 will increase the differences.

items 3, 4 and 5 on your list are what happens at the assessment so I cannot say much about these.

I see it as perfectly acceptable to find out all you can about the tests - I doubt anyone here would view it as revision. What you must do is be as honest as possible (I guess that is obvious though!).

Hey thank you for replying to me. I don't want to thread-jack, but I do find your responses helpful and kind.

You are right, yeah, I'm an adult (24) and I live in the UK (as I said in the other thread).

I have decided to go for assessment privately at the Hoffmann Foundation. It will use a quarter of my savings, but if I go for it now, while I am unemployed and claiming benefits, I am allowed a half-price concession. I am job-hunting, and when eventually there is success, I will no longer claim benefits (or at least far less) and then I would have to pay full price, which I could not afford. I have spent 2-3 years getting nowhere with the NHS. I have never been assessed with them. At worst, I've had a GP tell me to try sex to cope with depression. It's been a nightmare of a process. So I've taken this chance with going private, despite that not being the sort of thing I'd usually do.

Ok, so two questionnaires in advance of the meeting. When I returned the (self) referral form to the Hoffmann Foundation, I also sent them some reports. One was self-written, outlining in bullet points, what my traits are and have been through-out life, and my previous encounters with professionals. (And a few other bits too). Two of them were written by professionals at previous consultations in the NHS system. And one was written by a college chaplain/tutor to my GP a year ago, outlining her concerns with my behaviour and health. I sent photocopies, not originals, obviously. I wasn't sure if I should send these things, because they are not asked for. But the last thing I want is to get to the end of the assessment and think of all the things I wish I'd said or showed them, but didn't. So I thought I'd just go for it.

Being an adult, yeah, only module 4 of the ADOS will be used. Shame, I love toys! Hehe.

Three hours of face-to-face consultation. I guess they ask you a lot of questions?

With assessments, I'm always curious, if not paranoid, about what they take notes on. When I had a general mental health consultation a couple of years ago, with an Occupational Therapist and a CPN (community pyschiatric nurse) they noted (and wrote on my report) that my arms were waving in a wild, fluid way! I have no idea what they were talking about! I thought about Futurama, with the 'Wacky Waving Inflatable Arm Flailing Tube Man' advert, and laughed.

Excuse my ignorance, being new here, but I wondered if you have been diagnosed. Is that how you know things? Or have you found out about it another way?

Thanks again for sharing your knowledge and experience.

I've done... ADOS, ADI-R, GADS, GARS, ABAS-II, AQ, EQ, WIMS, WAIS... and I think that's it. They still don't settle on a diagnosis (one says ASD, one says autism, one says Asperger's, and one says Aspeger's or another PDD).

Just wanted to mention that the time flies while you're doing the testing, even if it's not that fun.

"alphabet soup!! !"

Hi. I am in UK london. My GP has referred me to mental health team after a private psyciatrist suggested AS to me. I am wondering what they will want to discuss with me. I don't want to talk only about depression. I want to know if I have AS.

Anyone knows about the procedures in the Netherlands? Is it different or thesame? I'm booked for around the hollidays, end of the year.

To CocoRock: I am going to send you a PM to address your more specific questions.

To Swordfish210: I don't know anything about the arrangements in the Netherlands, but I would guess that as there are a standard set of tests for AS, you'll need to speak to your family doctors about a referral to a specialist. tests such as the 'AQ test' and 'EQ test' are available on line.

The situation in the United Kingdom has changed recently, at least in legal terms. This means that the problems that CocoRock has told us about should increasingly be a thing of the past.

For detailed information charities such as the National Autistic Society (www.autism.org.uk) are a good place to go for detailed information as well as advice and support. They can for example explain the relevance of the various test noted in SuperTrooper's reply.

The reason why things are different know is that the Autism Act provide a legal right to treatment via the NHS. Those rights com fully into force next year, but from April this year each local health authority must begin making arrangement to ensure adequate services are made available for any person thought to be on the autistic spectrum.

The problem will always be that the NHS deem that any formal assessment or treatment would not be a good use of limited resources and therefore refuse treatment. In legal terms, I don't think that this can be justified in legal terms, but it may mean that you'd need to 'fight' for your rights.

The first stage in the referral and assessment process is getting your symptoms recognized by your family doctor. It is they who decide which specialist you need to see, in the first instance this could be a psychiatrist or psychologist, however as ASD's require specialised training it's important to establish whether the psychiatrist/psychologist has the required knowledge to make a formal assessment. some of the testing is paper based with questionnaires being sent and returned in advance or an interview.

The interview should last about three hours but I am only half way through that process myself. I have had a formal diagnosis, but it is diffent from what generally applicable and noted here.

I hope you find these comment helpful,please send a PM if you want to know more, I will help as best as I am able.

Thanks Euclid. So it seems the NHS may divert me from getting tested for AS? I hope its not a wast of time going to them.

It would make sense to give the NHS a go, but there are a few things I would do differently if I tried the NHS system again. I've listed these, in case they help others:

1. If you are referred somewhere, it might not be to a place that can diagnose AS. Ask what the aim of various appointments are, to avoid false hope. I was sent to mental health centre, where I could have been referred out again to somewhere that could assess AS, but this place itself could not. Because it was staffed by non-AS-experts, they could only judge based on how much in jeopardy I was, and judging me as low risk, low priority, I was not referred onwards, but instead 'back to my GP'. Unfortunately, due to wording in a report that I took literally, I believed I was going to be assessed. I was more than a little gutted to be back to square one.

2. Realise that the government is introducing the new budget in January. This means less money to the NHS. There's always the possibility that they might become tighter on what they decide is worthy of attention (and therefore money).

3. Take a second (trusted and willing) person along, who knows you well. I've been told (though never proved) that some professionals might be more likely to take you seriously when there is a second person. That said, they do have to be able to remain calm and confident even when hearing parts of your personality discussed as though a clinical symptom.

4. This is something I did do and would do again...After longer (30min+) appointments with professionals (not a GP probably) the professionals might offer you the chance to sign something to receive a copy of the notes they write up on you afterwards, in the post, free of charge. This was not easy reading and there were annoying inaccuracies but it was interesting. Now that I've given in and I'm going for assessement privately, I've photocopied these notes to show the next professionals.

. Well they certainly should be that dismissive, and while you might need to prepare for initial disappointment, it should be possible to enforce you right to NHS treatment without too much stress and effort on your part.

It's essential to have the support of your doctor and if needs be you can ask for a second opinion or change your doctor to someone more amenable.

Hi there, I've jumped from the getting to know you forum to this one thanks to your link Euclid. I've had trouble with GPs not taking me seriously and telling me there are no resources for adults, but reading this post is encouraging and I am looking for a recommendation of somewhere to go for a private diagnosis. I did consider the Hoffman centre so I would be really interested Cocorock in how you get on and whether you would recommend them. Also, am I right in saying that whatever the outcome, your GP does not need to know?

(As soon as I eventually get a diagnosis I will let you know and hopefully be in a position to give some advice and encouragement back!) My husband doesn't think I need a formal diagnosis and doesn't like the idea of paying hundreds of pounds for it, so I would need to know that I would be investing in a good set of professionals!

Hey. Yeah, I have an assessment appointment with the Hoffmann Foundation later this month and I'd love to help by giving my opinion and reporting the experience if it's appreciated. At the beginning of August, if all goes to plan, I will have had the assessment and have time to describe it, so if you're still interested then, feel free to ask. They send a report of the assessment to you, 6-8 weeks later, but I don't know whether they also tell you any results as the time too. But either way, I will have some experience of the process.

The Hoffmann Foundation have so far always responded quickly and attentively to emails I've sent asking some questions, so I'd expect you would get a good response from them if you had things you wanted to check out with them directly, before committing to anything.

Paying privately is expensive. This is my only attempt. I've never paid privately for anything before, and I'm unlikely to be in any position to manage to afford it again. But there are discounted rates for those on benefits or students, so I'm taking the chance while it's within my remit, after trying for years with the NHS and never getting assessment. In many ways I do not 'need' a diagnosis. I would manage without one. The only current practical need is explaining to potential employers about my strengths and weaknesses. Much of it is my own personal wish to know and to make sense of things. I'm not confident I will get a diagnosis and if I do, it might be PDD. I am 24, female, creative, intelligent and I am married. I'm probably in the least easy to diagnose group. Still, I'm convinced the traits are there and are significant enough.

I hope things go well for you. Did you ever get any assessment with the NHS? What happened?

Does anyone know what the procedure in the US is? Something tells me it's going to differ drastically from countries with nationalized health care.