What is it like being assessed for Asperger's?

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So, I'm 17, and I live in England. I told my school counsellor before the Christmas holidays that I think I may have Asperger's syndrome. She talked to me about it a little and said she would see if she could find out how I would go about getting an assessment. I saw her again on Thursday of this week and she told me she had spoken to the Special Educational Needs Co-ordinator who is in turn going to contact an educational psychologist and arrange for me to be screened for Asperger's/Autism. I get the feeling that it could take months for that to happen, is that usually the case? The counsellor didn't give me any idea of time and I didn't ask in our session because we had something else to talk about that was more urgent. I have read posts on here from people saying that the whole process leading up to a diagnosis (if there was one) usually took about a year, is that generally correct?

Also, what is it like being screened for Asperger's? How do they go about trying to find out whether I have it or not? What was your experience of being assessed like? Is the process any different if you have already been diagnosed with mental health problems such as anxiety/depression etc?

Then, hypothetically speaking, if I was diagnosed with Asperger's, what would happen? Would they contact my GP and inform them?

Apologies for all of the questions, and thank you in advance!

I don't know how relevant my experience will be for you. What I did was call an AS expert whose name I found online and made an appointment, so there was no waiting, I just had to pay out of pocket ($600). She sent me a bunch of questionnaires to fill out, and then I talked with her for about two hours, and that was it. She diagnosed me as being on the spectrum but wasn't entirely clear if it was AS or a shadow syndrome. If I had wanted a written assessment it would have cost an additional $600.

Best of luck.

I had trouble getting my brain out of the jar after they returned it. It wasn't too bad getting it back into my head.

You and one of your parents/guardian will probably need to fill out some questionnaires. You may be given an IQ test to see if there is a difference in performance vs verbal IQ, and/or peaks and valleys in the subtest scores. Then you (and probably a parent/guardian) will spend some time talking to the psychologist.

My assessment was in the US, but I assume all of the above will likely be part of a UK assessment.

Try not to stress out about the IQ test part. They are really pretty fun. You get to play with blocks and stuff.

In the UK, within the education system, there is no cost to you and no application or other process that you need to work on. They will arrange the assessment and call you in when a psychologist becomes available.

The process normally involves some chatting to assess your social interaction, possibly with more than one person to see how you interact in a group. There is a lengthy questionnaire, possibly several, to screen for autistic traits and early childhood development. A parent or older sibling might be interviewed about developmental milestones (the age at which you started speaking and walking etc), and about your home and social life.

The process could be very quick, and depends as much on the availability of the psychologist as anything else. You are 17 so I think you have the absolute discretion to decide who (including your own parents) is involved and is informed, but obviously some people have to be informed if you are to benefit from the diagnosis and any educational support or special needs provision that follows from it.

My test was taken in the states this what I remember from the test.

They gave me a mathematics test.
A reading comprehension test.
A test where I used blocks to reproduce an image with the blocks
A test where I had to name all the animals I could think of as quickly as possible
A test to name all the words I can think of that began with the letter H
I had to put pins in a hole as quickly a possible using one hand
There was a test where I put shapes in a catergory
I had to find what was wrong with a picture
I was asked what was the most comonly spoken language
I was asked who wrote Alice in wonder land
There were some other triva questions that I forgot about but were common
Several tests for memory
They gave me a list of questions for my parents to fill out and mail in.
A test to test my grip strength

The test took 7 hours I test in the average range due to memory issues in the IQ part and above average in the verbal IQ.

Let them know about your anxiety issues before showing so they will do their best to accomidate you. My psychologist knew right away I had Aspergers from the first conversation he had with me. Do not do anything to hide your Aspergers like you do when your in public I met a guy who was so good at blending in appearing as if he was NT the psychologist was suprised he had Aspergers. Good luck and be truthfull.

Last edited by Todesking on 07 Jan 2011, 4:44 pm, edited 1 time in total.

Not sure how relevant my experience in this is.

But what happened with me was: after getting a referal from my GP to a Autism Resource Centre, my mum and I got asked a series of questions, about me at that time and in childhood to determine if I might have some sort of autistic spectrum disorder. They decided I did and would undergo a more detailed assesment, which was really in-depth and happened in appointments over months.

Im assuming this will be different for you because you're at school and Im not sure how different the system is in England and Scotland (where I got diagnosed).

Personally, being asked a bunch of questions, like what do you act like in situations ? do you display these characteristics ? etc makes me really negative about myself, but that isnt the intention of the assesors - so for me it wasnt a fun process, but thats just my experience. Sorry dont know if the process is different if you have another diagnosis, although from recollection they do ask that at first.

Im assuming they would contact your GP as it would go on your medical record (I think).

Sorry for such a long post - hope this helps

I was assessed as a child at the age of 3 and have no recollection of that, but I was recently reassessed as a 35 year old adult in order to become eligle for state based disability services. Since my parents and other family could not be called in and they did need to confirm my childhood experiences I had to obtain all of my school reports as a child. I had to have an assessment with a speech pathologist, occupational therapist a psychologist and a psychiatrist. Part of all of those assessments was completing questionaires and other assessment type instruments. I had an adaptive behaviour test done, sensory assessment, and other things I can't recall fully.

I was assessed in part under the guidelines set up by my states Autism associaton:
http://www.autismvictoria.org.au/diagno ... SFINAL.pdf

Depression is a state of mind at the present moment, Autism, Aspergers and the like are lifelong development disorders and so they will require some form of ability to look at how you have coped your whole life, what your development was like, when you talked, what your social relationships and play behaviours and the like have been like. It would not be able to be done without your parents or other significant adults in your life being involved.

That was my experience, and it still is with most assessments or discussions about myself. Possibly it is related to alexithymia http://en.wikipedia.org/wiki/Alexithymia which is a reduced ability to identify emotions or feelings. Talking about yourself is intense, and you might feel the intensity without being able to identify the nature of the feeling. The evolutionary response is to treat that unknown as a threat, so you end up feeling really bad without knowing why.

Perhaps you will not have a bad experience, but if you do then it might help to know that other people feel the same way.

Thank you for all of the replies.

I really don't want to get my parents involved...I understand that they could be beneficial to the process of being assessed but they would definitely not take me seriously if I brought the subject up with them. They would probably also get angry at school for actually taking me seriously. It would cause a lot of conflict in my household. My parents are obsessed with me being 'normal' so...they would not support me in being screened for Asperger's and would be very opposed to the idea as they do not think I have have it and do not want to think I have it either. Plus, I may not have it; if I actually do end up being diagnosed with it then I will definitely consider talking to my parents about it with the help of my staff at my school, but I seriously don't think it would be possible to involve them in the screening process itself.

Would it still be possible to go ahead with the screening process without the involvement of my parents? What kind of difficulties would this create? As far as I am aware they are not allowed to inform my parents without my permission as I am 17 and therefore entitled to confidential healthcare. There are other aspects of my healthcare that some of the staff at my school are aware of but my parents are not, but I understand that being screened for Asperger's is a different issue as in this case parental involvement would only be to give details of my early development. But like I say, they would be very opposed to doing this and would probably totally refuse to do so. What kinds of things about my early development would be relevant to being screened for Asperger's? If I were to find out the information myself and then tell the psychologist or whoever, would that be accepted or would they not really count my testimony as valid?

Thank you all so much for your help. As you can tell, my parents make some aspects of my healthcare very difficult, and I do truly wish I could talk to them about such things but unfortunately I know how they would react and it certainly would not be in my best interests. Thankfully my school is very good with things like this and are giving me a lot of support.

Hey

I'm sorry but your parents do need to be involved. Because you are autistic from birth and you wouldn't give reliable information about your early years, they need to talk to your parents so they can see what you were like as a child.
In the beginning my parents told me that I couldn't possibly have AS, but that they thought there was a 'problem', which wasn't all down to adolescent self indulgence. They said that loads of the traits, everyone had, and that I'd been normal until 10 years old, they both said stuff like "everyone's on the spectrum really...what are you going to gain apart from an excuse from a diagnosis?". But they're being supportive now, just talk to them, tell them how you feel. It's so frustrating trying to talking about feelings and things like that! And trying not to sound like another teenager exaggerating everything. Good luck.

The medical assessments are a part of state-funded healthcare or state-funded educational service, and are for your personal benefit. As far as I am aware, you are an adult from age 16 and entitled to make your own decisions and receive care without parental consent, involvement or knowledge. If you are in a private school, then there might be a legal issue of the contract between your parents and the school requiring them to provide reasonable information about you to them. In practice, if the information is that important then you would probably agree that your parents should be informed.

But it is probably important and wise to involve them at some point if an autistic spectrum disorder is likely. The information that an assessor will want is about your early development - when did you first speak, first walk and form attachments; did you make or return normal eye contact and physical signs (like hugs); was your speech unusually precise, or vocabulary unusually large; were you clumsy in any way, etc, etc. The assessor will want to be assured that your behaviour has been lifelong and not a recent change, and then to distinguish between different diagnoses within the autistic spectrum.

Did you go through any of the assessments at the top of this forum http://www.wrongplanet.net/postt113459.html such as the AQ, and did you get a score in the autistic range? I am guessing that if your "parents are obsessed with me being 'normal'" then you already have some kind of issue that needs to be resolved. My advice is just to continue with the process you have started and if your parents need to be involved then involve them when they are required.

My assessment and diagnosis with High Functioning Autism came at age 43 (last year), and was done by a psychiatrist with an excellent reputation and specializing in this type of disorder. After seeing her for a few years of regular counseling, the Asperger's/HFA theory led to the test. Basically it was just viewing a few pages of peoples' faces, and guessing as to what those faces mean the person was thinking or feeling. Also there were standard verbal and written questions. There are many different assessments for Asperger's, and I suppose it's all up to your doctor as to which one (or ones) might be appropriate to choose.

All I can say is that once this diagnosis came to light, I felt the biggest feeling of relief and of finally having lifelong mysteries answered! It explained so many, MANY weird situations in which I had found myself while growing up, and in adult life. It was the most valuable discovery of any, in my point of view!

Charles

Yeah, that's what I thought. I don't go to a private school, it's a state school. They know other things about my healthcare that they have agreed not to involve my parents in already, relating to suspected depression and anxiety, and they are arranging an assessment for that (which should start within the next 6 weeks). I understand what you mean though.



Ah, ok. I know some of these things already having been told them by my parents (for example I learnt to talk really early; apparently people used to assume I was a couple of years older than I was because of my speech), but I understand that is different from it coming from them directly. I understand that would be the purpose of such information, too. Thank you for clarifying that.



Yep, a couple of months ago when I first joined this forum I found that thread and I did most, if not all, of the tests. I saved all of my results, too. My AQ was 35, for example. What I meant about my parents even stretches to petty things such as...I don't know, the type of music I listen to, or whatever. But they are really obsessed with the image I have outside of the family. My father always says he used to tell me off too much when I was little (as in, pre-school age) when I was 'just being a child' and that he regrets it now. I don't know what sort of things he was referring to, as he wouldn't really elaborate. But it was because he was afraid of how other people would see me, in this case badly behaved, I guess (and I was never a 'naughty' kid or anything, also according to my father).

Thank you for your help, I really value it because I don't know anybody IRL who knows anything about this kind of thing. Except maybe the counsellor, but I always seem to take a while to process our conversations and most of the questions come later, if that makes sense.

It's like going to a billion appointments and doing a billion tests that are at least 12 hours each.
They make you do puzzles and games and memory tests and thinking tests. What Todesking said covers it pretty well.

Legally at your age they cannot tell your parents things without your permission unless you a are a risk to yourself or others and I don't think that applies. But whether you can get a full diagnosis of aspergers without them is doubtful. You will have to decide when the time comes whether you want to involve them or whether you will go without the diagnosis if that is what is wanted.

The age you started talking is only one thing, it is also about what you said, how you said it, how you related to other people, etc. These are things you and your parents would not really think about, but when the questions are asked in the way they will be asked then it will really make them think back to that period of time. It is not the sort of thing that you talk about generally, ask about, etc, and it is really hard to explain. The age of doing things, or not doing things is very little to do with what it is about, it is about the type of language, how you used it, in what ways, etc. Really hard to describe in words. There are so many different aspects of language development and that is what they are trying to understand. There are also so many different aspects of social development, again not things the average person thinks of, and it is the different aspects of these that they will be trying to tease out and they are not things that come from a few simple questions, like the age you talked, walked, shared, made friends, etc.

The other reality is that any decent psychologist or counsellor should be able to assist you in talking to your parents. So if the time comes and you all agree it would be worth doing the full assessment then they should be willing to assist you to talk to your parents and to enable them to understand what they do need from them, why you are doing this, etc, etc. You will not be alone in this process, the professionals supporting you will be there with you and they are trained and work with parents every single day, as well as students and so they would have had plenty of eperience in dealing with difficult parents and will know the best ways to do so, if you decide to do it. I can assure you that from what you are describing this is something they would deal with every single day and would have had many similar experiences and while that does not mean that you are not unique and your feelings are not real and valid, it does mean that they really do get what you are going through and that a very large number of the young people they deal with have exactly the same issues, and there would have been times when they would have supported them to get their parents invovled. But it is not something you need to worry about now. If the time comes and they feel it is needed or even if they thought it was appropraite for your depression, etc, they will talk to you about and support you through it, it is not something they will do behind your back, they cannot do that, but if they think it is needed, would be good, etc they will raise it with you and they will speak to them with you, and they honestly will know how to speak to them in the best ways possible. What you are feeling in regards to your parents is really normal adolescent behaviour and relationships with parents. ALL parents want their kids to be normal, they all have hopes and dreams for them, etc and none of them ever plan on their child becoming depressed, or having any other problems, but in 99.99999% of cases they honestly are incredibly supportive when they do find out. Sure it would be hard for them, and it would be for any parent - no one dreams of their child being anything but perfectly normal!! !, and the counsellors supporting you will be able to refer them to counselling to come to terms with it if they feel they need it, but to be honest very very few do.

I guess what I am trying to say in a very long winded way is that no one will tell your parents anything without your invovlment and if they do think it would be benefical for them to become involved they will support you to do that and they will be there with you during the whole process, when you feel ready to tell them. Sure it will not be something your parents had planned for, it is not something any parent plans for, they all dream of a normal child, etc, but you in all likelihood would be very suprised at just how supportive parents are when they are given the chance to be. You do not have to do anything or worry about things being done behind your back, but do not think it is impossible for your parents to be supportive, they do love you. They may be shocked at first, but they will get over it, all parents do!! !