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View Full Version : Seeking advice from asperger's people-esp if you got diagnosed/found out as an adult



TVRodriguez
5-2-16, 3:12pm
If you have asperger's and especially if you found out as an adult, and if you could go back to your childhood and get some sort of services (behavioral therapy, social skills classes, etc), would you do it?

TVRodriguez
5-21-16, 2:14pm
After the overwhelming response (haha!) to my initial post, I realize I may need to provide more explanation, and maybe some folks can chime in if they have some experience . . .

My brother has a son who is diagnosed with autism, towards the asperger's end of the spectrum. Some of his non-neurotypical behavior is noticeable, especially in public. He is receiving treatment and is in a school for kids with special needs. He's super smart. My brother and SIL have never discussed his diagnosis with him. He was diagnosed around age 8 or so, but there was something "different" about him from a very early age. So that's him. SIL is a nurse practitioner in psychiatry who sometimes works with kids on the spectrum, as well as dealing with her own son.

A few months ago, brother and SIL came to visit us for a weekend. Over this weekend, SIL told me that she saw some behavior in my oldest son (age 9) that was on-the-spectrum like behavior. Brother also said he noticed it. DH & I had noticed some social skills weaknesses, but honestly "spectrum issues" never entered our minds. Things like, repeating a word over and over to the point of annoyance, talking to someone about a particular topic for too long, sometimes being overly sensitive and unable to "roll with the punches" when something goes "wrong" (ie, not the way he wants it to go), complete disinterestedness in team sports (inability to read body signals? unsure of that), sensitivity to loud noises (this one since he was an infant--he'd cry when DH sneezed too loudly), being half a beat "off" sometimes socially, sometimes overreacting to situations in ways that seem more appropriate for a toddler (eg, kicking the wall and refusing to go for a dental cleaning b/c he had to stop a video game). At a birthday party, one of the other boys said to him, "I like you, but sometimes you can be annoying." Things like this. Sometimes just bratty behavior, although not often as he's generally a very good, easy kid. He's always gotten along well generally with classmates and siblings, and teachers always love him b/c he follows rules extremely well, but he didn't always "click" with any particular kids until this past couple years. He's very analytical, and his academic performance is excellent.

So after brother and SIL told us their "diagnosis," DH and I started watching DS9 more closely. I attended more field trips with school to watch him interact with other kids and kept a closer eye. I read as many online descriptions as possible of autism and asperger's and blogs of parents with kids on the spectrum. I spoke privately with friends who have either kids on the spectrum or adult siblings on the spectrum. I did NOT consult with any professionals. I did not have my son evaluated. I did get contact info for psychologists from my pediatrician (without mentioning the word "autism" or "spectrum") but have not followed through on that at all.

Sometimes it seemed like he fit the "lists" perfectly. Sometimes it seemed way off. And sometimes I read those lists and experiences and found that I could put myself into them as a child, along with a lot of other people, and I wondered if it matters. I am a very well-adjusted adult, if I do say so myself. Perhaps a bit introverted, but so what? I'm quite fun at parties when I choose to go. :)

DH got a ton of books for our kids to read about social skills, and I've been reading them with the kids. I've been working on our interactions as well, giving more attention to each kid. Also doing things like being more explicit with DS9 about what is appropriate behavior and what is not. For example, "Son, repeating a word over and over like that can be annoying to the people around you. Please stop." Making lists with him about how to handle a situation when things don't go your way and you get angry. To avoid tantrums. Things that really do not only apply to "spectrum" type behavior but seem to be helping.

I did talk to the school counselor about some of his behavior, without mentioning the word "spectrum." She is his gifted math teacher, and it came up organically when I was visiting one day before a field trip--about his difficulty "rolling with the punches" and moving past a moment when it's not a big deal. And she started meeting with him for 15 minutes before school once a week. When that started, he got upset, saying that we think there is something wrong with him and that we want him to see a psychologist. She is not a psychologist, btw. But he stopped saying that and their little talks don't seem to be having a negative effect (although not sure they're helping at all either).

So I've decided that I'm not to have him professionally evaluated at this time. I think that he would have more questions about that and think that something is "wrong" with him and that that would be worse for him. I think that I can always change this decision if his behavior changes much in the future. I also think that I'm not sticking my head in the sand about my child's behavior and I'm addressing things as they come up.

So that was the basis for my initial post. I know this is super long! So thanks to anyone for reading this far. Any comments are welcome.

JaneV2.0
5-21-16, 2:54pm
I'm not qualified to give advice at all on this subject, but that's not stopping me. :~)

Informal Internet quizzes put me well into Asperger's territory, but I think that's just my introversion surfacing. Anyway, I would be wary of testing, lest your DS end up with a label he can't shake. I'm guessing a lot of his quirky behaviors can be unlearned, and you can help with that. I think you're on the right track. Would professionals do anything different?
Maybe prescribe drugs that make things worse? Back in the day, we didn't identify people with Asperger's--we just called them "engineers." :D

But everybody has to have a label now, so that they feel bad about themselves and are thus good candidates for pharmaceuticals (note sarcasm). I know people who collect labels like battle ribbons. Good luck to all of you.

JaneV2.0
5-21-16, 3:40pm
The autism spectrum comprises a wide range of abilities. It sounds like your sister was helped by the school she went to.

If I were in charge of the world, I wouldn't tack Asperger's syndrome onto the spectrum at all. I would guess there are a whole lot of engineers, coders, taxonomists, etc. who were never diagnosed. There are lists of brilliant, influential people--historically and otherwise--who are suspected of having been, but they were never labeled as such. Like Bill Gates.

Tammy
5-21-16, 8:14pm
These lists of symptoms need to interfere with one's life in a negative way in order to count toward the diagnosis. It sounds like some of what you are seeing are merely personality traits. I wouldn't worry about it. He sounds like a kid who's doing well in school and is generally happy.

Gardnr
5-21-16, 8:50pm
TV, you and hubby are well-educated adults/parents. You have educated yourself well on the "possible" diagnosis. You have made the decision to take coaching style actions with your son. It sounds like he is responsive to your coaching. I would agree that your increased involvement at school is a positive thing for both of you. It's a nonthreatening way to keep an eye on him.

If you have him evaluated and he is diagnosed, it becomes a lifelong label. That is good for some kids and hazardous for others. So many children have labels these days and I often wonder if these kids played outside like we did pre-atari, would these "labels" even exist? ADHD? or is it too dang much screen time and no physical activity. I get ants in my pants when i have a full day of meetings.....can't sit still.

I personally think that given your abilities to educate him and monitor him, your decision is sound. I support your current position on this.

TVRodriguez
5-22-16, 7:37am
JaneV2.0, Tammy, and Gardnr, thanks very much for your perspectives. I'm sorry I'm not replying to each of you individually, but each of you made points that really resonated. The point Tammy made about how these things need to interfere with daily living is one I've thought of as well in my decision making. As well as the one about how we all know folks who could be labeled if we wanted to. And yes, "coaching" seems to be a good way too describe the tack we're taking. And all our kids seem to be responsive to such coaching, so they all benefit rather than singling one out.

Thanks for your thoughts. I am appreciative.

Teacher Terry
5-22-16, 1:11pm
People with Asperger's tend to do well despite being a little behind in social skills. I think your coaching him is great. For years I worked with all kinds of disabilities from age 16 & up. I don't see any advantage in having him diagnosed. These individuals often do well in academic and work environments. The key is finding a suitable profession to their personality. For instance, they probably would not do well in jobs that require a great deal of social interaction, reading body language, etc.

mschrisgo2
5-23-16, 1:55am
I just have to add that I am a teacher and I've seen many socially awkward 9-yr-olds, boys and girls, turn into socially responsive young teens and beyond. Most children could benefit from the kind of coaching you are giving yours, and it is the "recommended therapy" for Aspergers. You would have to pay many hundreds of dollars for someone else to provide this, and it would not be nearly as effective because it would not be in response to real life situations, and your son would not trust them, as you have already seen. Keep up the Great Work!

TVRodriguez
6-9-16, 3:24pm
Thanks, Teacher Terry and mschrisgo2 for your comments last month. I missed them earlier.

Son seems to be doing well. Last week, there was a school fundraiser at the park near school--water slides, bounce houses, dance contests, food, all sorts of stuff. And Son announced he was not going to go, just as I was getting all 3 kids ready to go. I asked DH to come (he had not planned to go) and to encourage Son to come. So we all went. And all 3 of my kids saw the crowds and headed in the other direction, towards the jungle gym-type playground. As they climbed the play structure (alone), DH said to me out-of-their-earshot and quietly, "It looks like we have 3 socially awkward kids." "Give them time--when they see their friends, they'll join in," I said. I had already contacted a few other moms of Son's friends to confirm they were coming, and once his friends got there, Son took off and was the most active player of my three. Two other boys in his class (not his "best friends") also came looking for Son to play with them. And one of his good friends came by with his dad to our house after the event, and he and Son played really well together. So Son seems fine--he does take some coaching to get there, but once he's warmed up, he's good. He still does some stuff I'd rather he not do--calls himself ugly (he's gorgeous), makes really awful faces rather than smiling for photos, repeats inappropriate words ad nauseam. You know, a nine year old boy.

Daughter, however (age 7) didn't really click with any of the kids that were at the park that day. She saw some of her friends from class but didn't want to join in. And I didn't make her join in, I just walked around the park with her when she asked me to. She still had fun with her younger brother (DS5), who is the most socially outgoing of the three.

So overall, pretty good stuff.

bae
6-9-16, 3:36pm
I was a bit...different...as a child. I'm glad I wasn't formally diagnosed and "treated" any more than I was, I'm pretty sure that would have further crushed my developing intelligence and ability to do the sorts of things I do.

I do recall a somewhat isolated year and a half when the public school basically had me sit in the guidance counselor's office and read books and talk with adults about what I was reading. And I was subjected to an endless battery of IQ and other tests - I felt like the guy in Flowers for Algernon :-) I didn't attend any "regular" classes except for gym and home economics. I was in 5th grade, and reading 2-3 books a day minimum. At that age I spoke several languages other than English, was a lightning calculator, and couldn't lose a game of chess (I didn't manage to lose my first until college, by which time my savant-level math/chess skills had declined, I think due to "girls".)

I suspect they simply didn't want me in class with the "real" kids because I had an annoying habit of asking irritating questions. The Jesuits at our local church loved me though.

And as Jane 2.0 says: Back in the day, we didn't identify people with Asperger's--we just called them "engineers."

My daughter is similarly "odd", perhaps even more so. We basically supported and encouraged her differences, and it seems to have turned out well so far.