Autism eval tomorrow...

[BlsdMama]

I’m nervous. We waited months for this evaluation. 

 

We’ve wondered for years if she was an aspie, since she was probably two? Maybe before?

She’s extremely high functioning. Now the terminology is different and it seems very odd to use the word autistic for her. 

If you’ve had an eval done for your aspie I’d love to hear about it. 

[Pegs]

I'll be thinking of you!

I only have good things to say about the professionals who diagnosed my DS8. I wish you and your DD a positive experience as well. 

[Pawz4me]

How old is she? DS19 was evaluated about 2.5 years ago by a clinical psychologist, although I'd been fairly sure he was on the spectrum since he was a toddler. DH and I had an intake meeting with her that lasted about 90 minutes, then DS had two mornings of testing, about five or six hours in total. It took her a few weeks to prepare the report and then DH and I went back to meet with her to get the results. She said she'd be happy to meet with DS and discuss any questions he had after we explained the diagnoses (ASD-1, atypical learning disorder, very highly to profoundly gifted in a few areas) to him and talked it over. I don't know that he had any questions he hadn't already researched for himself, or at least not many, but we encouraged him to go and sit down with her himself and hear her explanations and ask any questions he had. Overall it was a very  good, easy experience.  I hope your DD's is, too! FWIW, we still refer to DS as an Aspie sometimes (the psychologist confirmed that would have been his diagnosis under the former DSM). Even though that's no longer technically correct, many people still identify strongly with the term and understand it better than the new ASD levels.

[Lecka]

I hope it goes well!  We just went for a re-eval about a month ago, with a paperwork review (we have a ton of paperwork lol) and then an ADOS.  For various frustrating reasons we needed an updated ADOS for insurance/medical purposes even though he has got tons of supporting paperwork, it is just not exactly what they want.  Sigh!  But anyway ----- it went very well, it was very smooth.  It was short and we had time to go out to lunch afterward! 

Our first time, the eval itself was very helpful, very smooth, and I felt like they were really listening and like they were really on top of things and I would be able to get good advice.  It was very stressful though overall as we had to travel for the appointment, spend the night before in a hotel, and arrange for other relatives to stay with my other kids. 

Still, two good experiences here!

For the re-eval, to some extent I felt like, 5 years in, I wasn't going to get many "answers" from someone who spent two hours with us and reviewed paperwork that *I know backwards and forwards.*  But I did get one insight, that is the kind of thing I had heard before, but I didn't quite see it exactly with my son and how it applied, and it is something she noted and it has clicked with me more since then. 

So it was worthwhile, even though I wondered if it would be, since I was really doing it to fulfill a bureaucratic requirement and not for my own personal gain.

Something else, my husband was able to go this time, and I think he got a lot more out of it.  We haven't read the same things and he hasn't had the same opportunities I have had to talk to other people about things, so that turned out to be a real positive. 

[Lecka]

Just to give context maybe, but when we went recently, the evaluator made a comment that my son was doing great, and my husband and I both gasped, and then she said "don't worry, he still has autism."  We need his paperwork to say autism!  It is needed for him.  It's not that we "want" him to have autism, but there are things that are very positive and needed for him, that he gets because he does have the diagnosis.

Then she said "what I mean is I am giving him 1s on almost everything" and she could tell from his paperwork he would have been getting more 2s when he had his original eval.  Or something like that. 

Keep in mind it is a really broad label, and also, there might be some mental image  you have where you think "that is what people think of when you say autistic."  Well -- those parents aren't going into evals either, thinking, "oh yes, autistic, that is the perfect label for my kid, that just sums him up perfectly."  That doesn't exist for anyone. 

Also you can definitely keep Aspie!  It is helpful!

However -- whatever Aspie means to you, it is also very broad, it also includes all different kinds of personalities and patterns of strength and weakness.  It isn't going to fit anybody, all the time, because it is too broad for that.  But when things do fit, it can be extremely helpful, I think.   

 

[ktgrok]

My son was evaluated at age 11, I so wish we'd done it way earlier. He was diagnosed with Asperger's back then, would just be ASD now. It was emotionally hard to get the diagnosis but really very helpful in understanding him. The book about Aspergers by Tony Atwood was invaluable. 

[kbutton]

7 hours ago, Lecka said:

Just to give context maybe, but when we went recently, the evaluator made a comment that my son was doing great, and my husband and I both gasped, and then she said "don't worry, he still has autism."  We need his paperwork to say autism!  It is needed for him.  It's not that we "want" him to have autism, but there are things that are very positive and needed for him, that he gets because he does have the diagnosis.

Then she said "what I mean is I am giving him 1s on almost everything" and she could tell from his paperwork he would have been getting more 2s when he had his original eval.  Or something like that. 

Keep in mind it is a really broad label, and also, there might be some mental image  you have where you think "that is what people think of when you say autistic."  Well -- those parents aren't going into evals either, thinking, "oh yes, autistic, that is the perfect label for my kid, that just sums him up perfectly."  That doesn't exist for anyone. 

 

The bolded happens every time we get updated testing, lol!

OP, it will be okay!
Our son was diagnosed at almost 9. It was between DSM IV and V, during the transition period. He was diagnosed PDD-NOS under the old system but qualified as Asperger's. They psych said she expected him to become more PDD-NOS and less Asperger's over time, and PDD-NOS got us the exact same help otherwise. He was rediagnosed ASD last summer. He is highly/profoundly gifted, and doesn't fit people's conceptions of autism, but he definitely is. It's interesting!

Getting a label has done nothing but bring good things our way, and our son can conceptualize his issues and make peace with them with a label. He's now almost 14, and while he has some significant challenges, he's doing so, so well. Getting a label went a long way toward figuring out how to help him and let him be himself in a good way.

[Lawyer&Mom]

On 4/4/2018 at 2:35 PM, kbutton said:

The bolded happens every time we get updated testing, lol!

OP, it will be okay!
Our son was diagnosed at almost 9. It was between DSM IV and V, during the transition period. He was diagnosed PDD-NOS under the old system but qualified as Asperger's. They psych said she expected him to become more PDD-NOS and less Asperger's over time, and PDD-NOS got us the exact same help otherwise. He was rediagnosed ASD last summer. He is highly/profoundly gifted, and doesn't fit people's conceptions of autism, but he definitely is. It's interesting!

Getting a label has done nothing but bring good things our way, and our son can conceptualize his issues and make peace with them with a label. He's now almost 14, and while he has some significant challenges, he's doing so, so well. Getting a label went a long way toward figuring out how to help him and let him be himself in a good way.

Highly gifted and autistic is an interesting combination.  I would say I’m both, but not at the same time...  I compensate just fine, until I don’t.  My mother strongly prefers the term Aspergers, which I am sure would have been my diagnosis under DSM IV.  I think she perceives it as the “good” autism.  I actually prefer the term autism.  I feel like my symptoms come in waves, and when my autism is flairing up I don’t feel particularly “good” or high-functioning, I feel autistic.

I have not been formally evaluated.  It’s really difficult to find someone who works with high-functioning adults (and actually returns phone calls.). I have had DD4.5 evaluated.  She is highly gifted, and did not receive an autism diagnosis.  I’m willing to accept that answer for now, but it doesn’t rule it out for me completely.  I suspect I also would have passed the ADOS at her age, and I know I’m autistic.  

[PeterPan]

4 hours ago, Lawyer&Mom said:

I have had DD4.5 evaluated.  She is highly gifted, and did not receive an autism diagnosis.  I’m willing to accept that answer for now, but it doesn’t rule it out for me completely.  I suspect I also would have passed the ADOS at her age, and I know I’m autistic.  

She had the ADOS or only paper questionaires? Personally, I'm down on paper questionaires for homeschoolers because people don't have enough time with our kids to fill those out. But if she's passing the ADOS, that's pretty tight. That's your gold standard there. You can have really atypical situations or maybe the person doing it isn't highly experienced, sure, absolutely. But still that's a pretty tight thing. 

I don't know how all psychs do it with adults. As you say, there aren't forms. There are some doing modifications of an ADOS, sort of innovating. I've heard some psychs will try to fish back to what a person was like as a child, blah blah. Personally, I think the modified ADOS is more interesting, because it's saying how do you actually function NOW and weeding that out. Remember, part of the diagnosis and reason it's clinical is because we move from quirky to significant, where it's affecting the person across settings significantly. 

[Lecka]

It might be older information, but I have seen a fair amount on spectrum news.org about the ADOS failing to identify quite a few children, especially girls.  

Also there’s the issue of camouflaging.  

I think some people need more comprehensive types of evaluations.  

There was just an article on spectrum news.org about the importance of asking people with autism what is going on inside their own head, and not just relying on observations.  Not exactly the same topic but I think it’s related, and I thought it made some good points.  

https://spectrumnews.org/features/deep-dive/ask-first-self-assessments-can-tell-us-autism/

Not that it’s groundbreaking information I’ve never heard before, but I liked how they put it together and I just saw it earlier this week.  

 

[PeterPan]

The comment about employment in that article is interesting.

[Lawyer&Mom]

I don’t really know if my daughter is autistic.  But she is *so* like me, I have to consider it.  I think as she gets older we will have a clearer picture.  I’m also quite interested in how she will describe her experience of the world when she is old enough.  (I can tell you now about how my autism manifested at age 4.  I was aware of the behaviors at the time, but had no context to know that they were noteworthy.)

Here is an interesting link about high functioning autistic women:

http://www.bbc.co.uk/news/resources/idt-sh/women_late_diagnosis_autism

I found it very relatable.

 

[Lecka]

Oh, I liked that article!

[Lecka]

On the employment, I wonder if they are referencing this, which is talking about the idea that for adults adaptive functioning is related to employment.

https://spectrumnews.org/opinion/viewpoint/intelligence-scores-not-predict-success-autistic-adults/

[PeterPan]

I took it as more of a basic thing, that just how they really function (beyond EF, which is very ADHD, but further like do they notice to help, do they connect to the group enough to realize they should be contributing, can they bring themselves to break from their own plans to help the group/family, etc.), that it was really indicative. And yes adaptive behavior. I've got a particular person in mind here who struggles literally at this basic level. 20, gifted IQ, can't peel an egg, doesn't notice anything in a group setting where they might contribute, and unable to hold even a basic job. 

[Terabith]

My daughter is almost 13, and she's always looked autistic to teachers, doctors, psychologists.....but then she passes the ADOS with flying colors.  The psychologist when she was five was absolutely floored.  He walked into the evaluation thinking, based on her classroom observation, that she was textbook autistic, and then she totally rocked the ADOS, like scored a zero for symptoms on it.  This has been repeated several times, yet when her psychologist looks at the DSM, she absolutely ticks off every single symptom.  She IS gifted.  But the older she gets, the more I think that she really isn't, despite my concerns since she was two.  She definitely has severe anxiety, and the more anxious she is, the more autistic she looks.  She'll still, at two weeks from 13, hide behind me to keep from making small talk with people passing the peace at church (which is a pretty standard script....peace be with you thing).  She hissed at one man who surprised her by trying to shake her hand.  She has some sensory issues.  She has some obsessive interests.  Honestly, counseling has really been pretty much a bust for us, because she really can't talk about her anxiety.  She doesn't know what makes her anxious.  She just is.  She also, to some degree, just doesn't give a darn about social conventions, which as a middle school girl, can be pretty weird.  The ADOS, however, works to her strengths.  It uses a lot of language and imagination, where she thrives.  It's one on one, low pressure.  She has good theory of mind.  She can read facial expressions.  Honestly, she's doing okay in life right now.  It would be nice to have a good diagnosis that explains her and gives us a plan for going forward, because I don't really know what to expect long term.  There are worse obsessions than Dungeons and Dragons, which has really given her a social life and in many ways works as therapy both for emotions and for social skills.  

[PeterPan]

Terabith, you might run genetics and dig in on that anxiety piece. There's a gene they've identified that, when glitched, means the tryptophan isn't converting well to 5HTP.

[Lawyer&Mom]

22 hours ago, Terabith said:

The ADOS, however, works to her strengths.  It uses a lot of language and imagination, where she thrives.  It's one on one, low pressure.  She has good theory of mind.  She can read facial expressions.  Honestly, she's doing okay in life right now.  It would be nice to have a good diagnosis that explains her and gives us a plan for going forward, because I don't really know what to expect long term.  

This. Exactly this.  I’m almost positive I would have passed the ADOS, if anyone had been giving it to highly gifted girls in the mid-eighties.  I loved talking to grownups!  They loved talking to me!  I was highly verbal and precocious!  Sure, we can have a tea party for these stuffed animals!  Why not?

Meanwhile, on the playground I was autistic as heck.  (Unless I was busy hiding/stimming in the library that recess.)

I’m heartened by the reporting at http://spectrumnews.org.  I wasn’t familiar with that site, and the analysis seemed very insightful.  People seem to be “getting” it.  I’m still not sure that the diagnostic tools “get” highly gifted/highly functioning autistic girls.

 

 

 

[Terabith]

Yeah.  Random social situations, she comes across as either autistic or really hostile.  She really ISN'T hostile, but those free form social interactions produce so much anxiety that it's easier to glare at people until they go away, or scowl at them, or hell, even just meow/ hiss/ growl.  It's really weird behavior, and not really age appropriate anymore.  But she gets so anxious, and hostility is easier than freezing up, which is the other thing that happens.  She does better with structure, which is why she loves role playing games.  Verbal, imaginative, small group, low pressure, and between the dungeon master and the dice, there's a structure that there isn't on the playground.

[PeterPan]

44 minutes ago, nwahomeschoolmom said:

Just wanted to say I'm in the same boat as you....We get our results on Monday.  I hope.  The results appointment has already been delayed twice.   We got it done at a university so we couldn't find out right away. We had 13 hours of evaluation total during March.  They didn't explicitly say that they were testing for ADHD or ASD on the form I signed, they said "attention/concentration" and "social skills."  But I looked up the form we filled out at home and it was definitely an ASD form.  I don't even know what tests they used other than the Weschler.  I was so nervous when she gave me the form to sign, and then I didn't want to ask after that. Part of me is like if he is so borderline its hard to get a diagnosis, then maybe we can just deal with it....I want it to be obvious like "your son obviously has these problems."  So I guess I didn't care what tests they used.  

Things have changed drastically in the past few months...We are having issues everywhere else and a bit less at home.  I'm having to tell people he might be on the spectrum because ADHD just doesn't explain it anymore.  We had to quit our homeschool co-op due to him having a meltdown there (when I mistakenly gave him a break from probiotics) and then its a long story...but it felt best to find another co-op.   He has never stopped being a super sweet boy though.  In any case...hope you get the diagnosis that will help your daughter and your family!  

The waiting is the hard part! And poor thing having to change co-ops. Is the new one working better? Whether they say ASD or ADHD, some of the interventions, like Zones of Regulation and social thinking materials would be the same. If you want to look up Zones of Reg, might give you something to do during this wait. I know it's squirrelly crazy.