Autism questions

[Pawz4me]

(I hope this is the right forum for this--my first time posting here.)

 

A not too brief summary before I get to my probably relatively simple questions --

 

We've always known something was a bit off with DS17.  As an infant he was very fussy and had sleep issues (much more than just a normal bad sleeper).

 

He was diagnosed with speech issues (suspected apraxia, but we were never given a truly formal diagnosis) and sensory issues as a toddler and received private speech and OT for several years.

 

We had him evaluated twice -- once at a children's hospital when he was around two.  Their conclusion was that he had some slight developmental delays but nothing major and just needed speech therapy.  A couple of years later we had him evaluated by a school psychologist to see if he qualified for any school based services.  They said he did not, that he was fine.

 

He had what in hindsight I've learned was hyperlexia.  He pretty much taught himself to read fluently before he was four.  In kindergarten he was tested and was reading at middle school level (the highest level they could test for).  His comprehension was also very good.  At the time I didn't know hyperlexia could be a warning sign, and none of the teachers were apparently aware of it, either.  We all thought he was just a very advanced early reader.  Aka a super smart kid.

 

He was also advanced in math.  Before starting kindy he could add or subtract two 3 digit numbers in his head.  Not 200 minus 100, but numbers like 987 minus 356.

 

Over the years he learned to deal with his sensory issues and speech became less of an issue.  When he was discharged from therapy around age six his articulation was pretty good but his prosody was off, which we continued to attribute to the apraxia. That's gotten markedly better over the years.

 

His handwriting has always been terrible.  Legible but very messy.

 

He did fairly well over the years, excelling academically during our home schooling years and integrating into a public early college program with little academic difficulty (he has a near perfect GPA that includes ten college level classes completed and four more in progress. But anxiety became more and more of an issue once he started the early college program, and this past August he started seeing a psychiatrist for help with that.  DS really likes her, and so do I.

 

She's only seem him three or four times.  On Tuesday she told me (but not him) that she believes he's autistic.  I told her that I certainly wouldn't argue with her, as I had long suspected that he was since all the issues he's had over the years, even though none were truly major, all pointed in that direction.  She says she's not going to put that label on him because at his age there's really no point.

 

My questions are:

 

Even though I agree with her and have suspected for years that he was at least slightly on the spectrum, I'm curious if a regular child/adolescent psychiatrist is qualified to diagnose autism?  Or does it really require a full neuropsych evaluation?

 

Are there any good reasons for labeling/not labeling him?  Anything that would help or harm him down the road?

 

She said she wasn't going to tell him.  I didn't think to ask her why, although I will.  I can't understand that, unless she felt that it's something DH and I should handle?  Why wouldn't we tell him?

 

Other than Temple Grandin, are there any good books that have been written by people with high functioning autism?  Are Temple Grandin's books worth reading?  Of course I think I have a pretty good handle on what goes on in DS's head, but . . . maybe I don't.  I think it would be helpful to read about what life is really like for someone with autism.

 

All advice and comments are welcomed and appreciated!

[Tanaqui]

Your son is nearly an adult. He should definitely be told. Speaking as an autistic individual, the fact that my parents didn't tell me when I was a child and they knew is still pretty upsetting to me.

 

As for whether or not a label is useful now, that depends. Does he intend to go to college? Having a label could get him needed accommodations such as the ability to opt out of lecture classes or to take his exams in a private area or whatever he needs. Does he plan to get a job? Having a label could help him get accommodations there as well. Without a label, he would have to negotiate everything with a chance of not getting the help he needs to be successful in work and school. With one, the law steps in and helps him out.

 

Other than Temple Grandin, are there any good books that have been written by people with high functioning autism?  Are Temple Grandin's books worth reading?

 

Well, I think Temple Grandin is kinda an ablist pain, but she's still worth reading. It's good to read a variety of works by autistics, because we don't all have the same views and perspective. Many of us post online, and there are fora where family and friends of autistics can get help from autistic members.

 

I would give you a list of some of my favorite blogs, but many of them are a bit, well, vehement - not sure if that's what you're looking for right now :)

 

One note: Many autistics strongly dislike person-first language. You'll note I'm not a person with autism, no more than I'm a person with left-handedness or a person with femaleness or a person with heterosexuality. So in your shoes, I would not get married to the idea that PFL is more polite or more respectful or whatever. This is not universally accepted.

Edited March 31, 2016 by Tanaqui

[Tiramisu]

I personally think a np eval was helpful for us. It was recommended by a mature, experienced developmental pediiatrician who recognized mild cases are hard to nail down and wanted the best np she could think of to puzzle it out.

 

The point the developmental pediatrician made is that it's a clinical diagnosis and there is some subjectivity. It's not something that can be dx'd by a blood test and it only determined by there being a collection of symptoms and varying degrees of them, and different people will see that differently.. Tony Attwood who is kind of an Aspergers specialst, especially for girls and women, has commented that he just has a sense about it. And I think if you deal with someone who has a good amount of experience, they will have that sense, as well as an understanding of the usefulness of the label for different individuals.

 

This is what our np told us for dd who is a few years younger than your ds. Even though her difficulties are on the mild side, they are clearly there, and it will be very important to take them into consideration for career choice, etc. That's why she gave the label. She also said she did not recommend a large public high school environment for her, so she was also seeing the need to take the diagnosis into consideration for educational choice as well. Through the testing, she also confirmed dd's visual issues, and that has been helpful, too.

 

Like your ds's psychiatrist, she recommended not telling dd herself because she didn't think the label itself would be helpful to HER right now. However, she helped me make a list of her strengths and weaknesses that I could share with her at the end of the testing, because those could be practically helpful. She believes that she may naturally figure it out, but right now it would not be beneficial to announce it to her.

 

My oldest also has had issues over the years. She is doing very well, living away at college and is becoming very independent, but her sensory issues and anxiety are something she still struggles with almost daily. It's pretty clear, she's not going to completely overcome them at this point. She processes more slowly and still often says, "Wait. I'm confused," even as a young adult. Because of what the np said about my other dd, I have been wondering about trying to find out if she needs a label. Right now it's only CAPD, but because her difficulties continue, despite treatment, it might be beneficial to have a name for it. That might be a path for her to get some better understanding and direction for the future, for things like the type of work environment. She already knows her career and she's figuring out that large group work may not be the best for her. She is also beginning to recognize her strengths relative to others, so there's that balancing it out.

 

I know there are books written by women who are Aspies in the library and available on kindle. I haven't been crazy about any I've read. The is the one called Look Me in the Eye, which is written by a man.

 

I also have been enjoying the videos from AspergerExperts. I watched them on youtube and then registered on their site so now I get little emails everyday about different issues. I do find them very helpful and encouraging.

[Tiramisu]

Your son is nearly an adult. He should definitely be told. Speaking as an autistic individual, the fact that my parents didn't tell me when I was a child and they knew is still pretty upsetting to me.

 

Thanks, Tanaqui, for sharing this.

 

[Crimson Wife]

It is very difficult with "twice exceptional" children to get an accurate diagnosis because traits of giftedness can be mislabeled as traits of ASD or other conditions. I would NOT rely on a general child psychiatrist to make one. You need a neuropsych or educational psych with experience working with 2E individuals. Drs. Ed Amend and Jim Webb wrote an excellent book called Misdiagnosis and Dual Diagnoses of Gifted Children and Adults that I would strongly encourage you to read.

 

That's not to say that your DS might not have ASD (and frankly, if we would not use other neurological disorders as adjectives like "Cerebral Palsic" or "Multiple Sclerotic" than it is offensive to use "autistic" as an adjective as well). But you need to have someone familiar with 2E issues to do the evaluation.

[kbutton]

I think I would want a label for legal protection if he were to need accommodations at work (and college). You also have some influence now over the decisions when he's 17, but not so much when he's older. If he hits a crisis point and "doesn't want to think about the possibility" then, will he seek additional evaluations that could help? Just wondering aloud about this. Also, if someone else thinks the idea of autism as applying to your son is ridiculous due to an outdated understanding of what autism looks like, and that person is working with him in the future about his schooling, employment, mental health, life choices, etc. (boss, academic advisor, etc.), is it going to be better or worse to have a diagnosis in place to keep a person with that kind of bias from doing damage? My husband is not on the spectrum (my son is), but my husband's academic advisor in college was a jerk, plain and simple. He rooted for my husband's every misstep (and this was at a small, private college!). 

 

I would look at waiting lists. Qualified to diagnose and allowed to diagnose might not be the same thing. If the psychiatrist is bringing this up, I'd ask her directly if she has the legal ability and experience to diagnose, or if she refers out. (If she refers out, I would want someone good with 2e.) Your gut has been saying autism for quite some time. The psychiatrist brought it up. If you are going to have to wait a long time to get into an NP (possibly past his birth date), and he doesn't want to pursue an evaluation with someone else (he likes this professional) or for other reasons, you have fewer things you can do about it once he's 18.

 

If he's not interested in diagnosis, regardless of age, then you have to figure out whether or not the timing is right for your relationship with him and what the tradeoffs might be if you push the issue. It sounds like you have a good relationship, and that professional help is just par for the course for your family (not something you stigmatize). I think those are things that are going well for you regardless of what you decided to do about a diagnosis.

 

Our son is moderately gifted. I have to read gifted stuff, autism stuff, and kind of extrapolate from there. I learn a lot of really helpful stuff if I keep an open mind while reading, but you do have to kind of weed through a lot of things that aren't going to apply. Dierdre Lovecky wrote a book called Different Minds about 2e kids with ADHD, ASD, NVLD, etc. It's dry, but I found it very helpful.

[8filltheheart]

Has she done a complete battery of tests or is she simply basing her diagnosis on interacting with him for his anxiety?  FWIW, there is value in having a diagnosis if the diagnosis is valid.  It can open up services through the dept of rehab of your state.  But, they will not accept a diagnosis without a complete battery of tests.  Our state actually paid for our ds's testing (multiple hours over 2 days).  

 

Any "I think-s" based on simple interaction would not satisfy me.  Our ds was mislabeled multiple time by drs who thought they **knew everything** w/o any testing.  That roller coaster is not one I would want anyone to experience.  If she thinks that is what it is, tell her you want testing done.

[Tanaqui]

That's not to say that your DS might not have ASD (and frankly, if we would not use other neurological disorders as adjectives like "Cerebral Palsic" or "Multiple Sclerotic" than it is offensive to use "autistic" as an adjective as well). But you need to have someone familiar with 2E issues to do the evaluation.

 

If somebody with CP said to refer to their condition in a certain way, I'd do that. It is extremely offensive to criticize another person's self-identification. You always defer to the disabled person.

 

As a point of fact, it's not just autistics who, as a group, tend to dislike PFL. The National Federation of the Blind specifically condemns it, and I'm pretty sure it's widely disparaged among the Deaf community as well.

 

Personally, I find the rationale behind PFL to be extremely bizarre and offensive (you might forget I'm a person unless you say the word first? say what?), I find the effect to be stigmatizing (we never do this with positive attributes, after all), and I think the reasoning that autism is only a small part of me  and "doesn't define me" to be specious at best. I'm the person best qualified to determine which aspects of my personality are big and small, after all, and I think things that affect how I think are really well up there on the list :)

 

But let's not derail this all.

[Pawz4me]

Thanks for all the comments.

 

We're in the middle of a move right now and my brain is fried tonight.  I will come back and re-read and comment later.

[KSinNS]

I would certainly discuss it with him, and consider full evals. I have found John Elder Robison's books to be very helpful. I also really like the blog called Snagglebox. Not sure how active she is now, and while she herself is autistic (her preferred word) her blog largely deals with issues for younger kids, but there may be some useful posts.

[Pawz4me]

 

As for whether or not a label is useful now, that depends. Does he intend to go to college? Having a label could get him needed accommodations such as the ability to opt out of lecture classes or to take his exams in a private area or whatever he needs. Does he plan to get a job? Having a label could help him get accommodations there as well. Without a label, he would have to negotiate everything with a chance of not getting the help he needs to be successful in work and school. With one, the law steps in and helps him out.

 

Yes, he certainly intends to go to college and get a job.  He's in college now in his early college high school program.  He takes classes at the local CC and is over halfway to earning an AS.  He's had no problem at all so far -- no accommodations needed to maintain an almost 4.0 college GPA.  At this point he intends to attend one of the state universities and major in a computer related field.

 

He also belongs to his school's Quiz Bowl team and although I don't mean to brag I have to say that he largely carries the team.  He has no problem at all answering questions in front of an audience.  But if someone he doesn't know well asks him one on one about anything, and especially something personal--that's when communication becomes difficult for him.  Even with DH and me he often has trouble expressing his feelings or desires.

 

We have touched on his college visits and plans with the psychiatrist.  At his last visit we told her that he'd toured the local state university, and she seemed to favor the idea of him commuting for the first year or two versus living in a dorm.  DH and I have known for a long time that he likely wouldn't do well in a dorm "just" due to his introversion and anxiety.  He needs a LOT of alone time to recharge.

 

 

You also have some influence now over the decisions when he's 17, but not so much when he's older. If he hits a crisis point and "doesn't want to think about the possibility" then, will he seek additional evaluations that could help?

 

(snip)

 

If he's not interested in diagnosis, regardless of age, then you have to figure out whether or not the timing is right for your relationship with him and what the tradeoffs might be if you push the issue. It sounds like you have a good relationship, and that professional help is just par for the course for your family (not something you stigmatize). I think those are things that are going well for you regardless of what you decided to do about a diagnosis.

 

Our son is moderately gifted. I have to read gifted stuff, autism stuff, and kind of extrapolate from there. I learn a lot of really helpful stuff if I keep an open mind while reading, but you do have to kind of weed through a lot of things that aren't going to apply. Dierdre Lovecky wrote a book called Different Minds about 2e kids with ADHD, ASD, NVLD, etc. It's dry, but I found it very helpful.

 

 

Thankfully DS is very easy going (almost too easy going) and we have a great relationship.  I think he would willingly do whatever we suggested, whether it's now or a few years down the road.  Of course things can happen to change that, but so far we have a good, solid foundation.  And yes -- seeking help is normal for us.  I do agree that at almost 18 the decision of whether or not to pursue a formal diagnosis should be mostly, if not all, his.  But he will likely ask our opinion and go along with it.

 

 

Has she done a complete battery of tests or is she simply basing her diagnosis on interacting with him for his anxiety?  FWIW, there is value in having a diagnosis if the diagnosis is valid.  It can open up services through the dept of rehab of your state.  But, they will not accept a diagnosis without a complete battery of tests.  Our state actually paid for our ds's testing (multiple hours over 2 days).  

 

Any "I think-s" based on simple interaction would not satisfy me.  Our ds was mislabeled multiple time by drs who thought they **knew everything** w/o any testing.  That roller coaster is not one I would want anyone to experience.  If she thinks that is what it is, tell her you want testing done.

 

Her opinion is just based on interacting with him, and from what she told me based mostly on how difficult it is to get information out of him about how he's doing, what he's feeling, what his plans are, etc.  He tends to give one word answers when asked basic questions and never volunteers more.

 

The discussion of language is interesting and something I'm going to have to think about when I'm less tired.  I'm just as likely to refer to myself by saying "I'm hypothyroid" as I am to say "I have hypothyroidism."  It's something I've never really thought about.

[8filltheheart]

as the parent of an adult Aspie, I would strongly suggest treading carefully bc self-identity is a huge part of who they are at this age. If he is autistic, it might help him explain a lot of things to himself, but if he isn't, he might have a crisis of wondering why a dr might think he is.

 

Our ds has had some issues with knowing he is autistic. At 24 he is seeing it as a positive way of understanding himself. But he spent a long time angry and resenting it. He was diagnosed at 16.

 

But our ds is impacted in a way where he has really struggled with the transition to adulthood and resents seeing how easily his siblings move forward and do and have things that he isn't doing. (He has younger siblings who are adults and have relationships, careers, away at college, etc. It is hard.)