Testing for an ASD?

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Hello everyone! I was diagnosed with NVLD when I was 16 (I am now 20), via a psych-ed test I was given by a child psychologist at the children's hospital... It said I did not have ADHD, as well. My current psychiatrist has diagnosed me with Schizoaffective disorder, a combination of Schizophrenia and Bipolar Illness, and ADHD. I start college in September, and am worried that the disability services will not accept one of the opinions because they kind of cancel each other out, and the psych-ed is kind of old. My grandma has always thought I have AS instead of NVLD (my grandparents are my caregivers), and she said we might want to ask my psychiatrist about testing me for an ASD, as it would probably get me more services in college, as well as long term, as we worry about housing and possible group homes for when my grandparents can no longer care for me... There are not a lot of group homes for the mentally ill here, but there are more for adults with ASDs. I had a psychiatrist that once said it was likely I had AS, but that she did not have the time it would take to test me for it. I made an appointment with a psychologist to have a psych-ed done again, and testing for an ASD... For those of you who don't know what NVLD is, it stands for Nonverbal Learning Disorder. It's very similar to AS, with the differences of no restricted interest, no stimming, and no real problems with eye contact. The only thing is, I do have problems with eye contact, I play with my hair or fingers when nervous or excited (not sure if that counts as stimming), and I am totally obsessed with the minions from Despicable Me.. Lol. Everything in my room is minions, every movie I watch is minions, if someone will listen, I will talk about minions. Before that it was Law and Order: SVU.. I still have all the DVDs to almost the whole series, up until I lost interest. And before that, American Idol. I talked about it so much at school, people would draw pictures of me and American Idol people.. In a mocking sort of way, but I had no idea then, my grandma had to point it out. When I was little it was always some Disney movie. I'd watch the movie until it broke, have all the plush dolls and toys for it.. But I'd just rein act the movie or line up the toys the way I wanted to.

I have problems with people touching me, but I bite myself or scratch myself when upset because I don't know how else to communicate how I feel, and I feel no real pain from it. I don't understand sayings, although I can be sarcastic at times. I have no idea how to read facial expressions, the psychologist that did my original psych-ed said I tested at a very low level for that. I only have two friends, and they both know about my.. erm.. "problem", and even then we sometimes clash and I question the need to even have them as friends. But the psychologist said these can all be because I have NVLD (they never tested me for AS/Autism...)

I'm just wondering... I live in Canada, and because I am now an adult, I have to pay for these assessments from the psychologist. Do you think it's worth paying for the Autism testing? It's about $3,100... I did the math... My grandma seems to think I may have Autism, what used to be known as AS, but I thought I'd ask, does any of this sound like you or your children, or should I not bother with the testing?

Hello! From what you've written, it does sound like you have an ASD. Many professionals are not familiar with it, especially in females. It was particularly uncommon as a diagnosis until recently as well. It may very well be that ASD encompasses most of the other diagnoses you have been given, and is a better explanation overall. It might feel good to finally have an explanation that explains everything holistically.

I live in Canada too and I believe that it is possible to have an ASD screening done for free under public health care. If you want to keep the diagnosis private (meaning that it won't be on your permanent medical record unless you request that it be so), you will be paying somewhere upwards of $2000. Otherwise, if you just go purely with Medicare, I think it is fully covered. I'm not completely sure about this, but the best thing for you to do is to ask the psychologist who will be doing your assessment what the terms are and if you are going to be paying or reimbursed, etc.

You say you made an appointment already for another psych-ed and testing for ASD? Better to make sure you know what you're getting into before you go.

To address some of your points:

1) I came very close to qualifying for NVLD, and my psych thought that I would have been diagnosed with it while in elementary or high school. I only got better at some of the skills involved in non-verbal testing components (mainly math) in my university years, while I was pretty clear-cut NVLD as a younger child. You are correct in saying that NVLD is very similar to AS. Because you do appear to have restricted interests and stimming as well as social/communication issues, I think you are very strong case for having AS.

2) Playing with your hair counts as stimming, yes. Do you do it often? Do you do it more when you are stressed or excited? I mean, most people have a couple things they do, but with AS it's about the frequency and probably about when and where they do it, etc. I twirl my hair a lot. I do it while I'm talking, especially, as well as when I'm stressed, bored, or doing some deep thinking. I think "hand-related" stims are particularly common among autistics. (By the way, the biting/scratching yourself qualify as stims too, if you are doing them in order to achieve a physical sensation and/or block out another unpleasant sensation. I bite my fingers hard sometimes, but only very rarely. It is when I am extremely distraught or stressed.) Stimming itself is not a requirement for the diagnosis, but it falls under "Demonstration of restricted and repetitive patterns of behaviour, interest or activities" along with fixated interests.

3) When you say you "tested at a low level" for reading facial expressions, do you mean that you weren't too bad at it according to the tests? For my assessment there were no expression-reading tests or emotion-quotient or things like that. (Some people with AS will not do horribly on those tests and these are generally thought to be unreliable in comparison to real-life interactions.) Besides a general IQ test, my assessment was very focused around anecdotes about social/communication issues and repetitive behaviours from early childhood up to the present. In your case, I think they will rely heavily on reports from your grandparents (or just one of them, whichever remembers your childhood history the best), and that will include any issues that came up while you were in school. They will also be looking at how you communicate and interact - even though it isn't much time, they know what to look for and have "seen it all."

You may want to write some notes about why you think you may have AS to bring with you to the assessment or send to the psych to review before you go. It lets them understand where you're coming from in terms of your own reasoning, and it allows them to do some analysis beforehand. They might want to bring up some of the stuff in person to clarify or expand on it. My assessment was 6 hours (but I think more than half of it was spent with them talking to my mom rather than myself - they are wary of self-reporting I guess), but it did feel pretty short. The fact that we sent them some notes before going in helped them understand what they were dealing with even before I arrived.

I hope this helps!

Oh okay. I live in BC, so things probably work slightly differently there for healthcare.

It strikes me as odd that there are no places that will test adults. How did you manage to make an appointment to get tested in that case? The psychologist who did my testing normally does it on children and it was conducted at a centre that provides education to autistic kids, however, they had no problem doing it on adults and it was fairly common.

The assessment for autism might only last two hours because they might not need for you to do a standardized IQ test since you have already done one in the past for NVLD. And yes, that's right, they do not require a caregiver to be present. I could have done mine on my own and they would have asked me the questions instead of my mom (and honestly, I totally remembered more details about my childhood than she did - however, she had her own stories and insights that I didn't). But yeah, you can do it on your own as an adult and it will still be very reliable.

It really sounds to me like you have autism. If you can afford it, I think that you should go for it and get the assessment done. It's always a warning sign when you've been diagnosed with other things that you feel don't fully fit. I can tell you that it feels great to finally find out what's really going on and have something that truly does fit.

I meant to say the only psychologist I could find that would test adults for ASDs was one that is not covered by OHIP, and that I have to pay for. I have that one, two hour appointment to test for Autism Spectrum Disorder, as they said Asperger's is no longer in the DSM, three appointments that will also be two hours for a psych-ed, and one appointment that I'm not sure of the length, to discuss all the results.

Thank you for your support, I am hoping that this testing will lead to a diagnosis that will make a little more sense than the current ones I have. I would be happy to know this is all Autism and I can stop taking the damned mood stabilizer and antipsychotic. Although I doubt that would happen. But I have noticed that on antipsychotics, I am a little less irritable, so maybe there are some benefits.

Make sure you bring up the fact that you don't think your current diagnoses fit and why, as well as your concerns about the medications ("What if I don't actually need these?" Etc.)

I'm glad you're doing this for yourself. I wish you all the best.

Since my psychiatrist is the one that manages my meds, and she is very confident in the diagnoses she has given me, I doubt I will ever get off them. No matter what this psychologist says. I am hoping my psychiatrist will consider the diagnosis this assessment generates, it wouldn't be the first time a different doctor has given their opinion and she has disregarded it.

Just ask for advice from this new doctor, it can't hurt. You have a right to ask your doctors anything - as well as a right to seek a new doctor.

I will. Unfortunately I won't be able to afford to continue to see this psychologist after the assessment, and as for finding a new psychiatrist, mine is the only one my family doctor will refer me to.

You can explain things to the family doctor too, and if they are stubborn for no good reason, you also have the right to switch to a different general practitioner. I just want you realize that you are never stuck in a situation where you feel powerless or ignored. You never have to be - just remember that.

As far as I know, the only other psychiatrist he could refer me to, if he would even do so, would be one at our city's psychiatric hospital. They go by clinics there-- the Schizophrenia clinic, the mood disorder clinic, the anxiety disorder clinic, etc. But as far as I know there's no clinic for autism for adults. There's a concurrent disorder clinic, but I'm not sure what that means. I'm not sure if that means autism and mental illness or drug addiction and mental illness. I can't remember. So a new psychiatrist might not work out.

I understand. Sometimes you just have to work with what you've got.

Well as long as my psychiatrist will accept whatever diagnosis comes from this assessment, I don't see a problem.

That's true.