Formal diagnosis helpful?

Post Reply New Topic

Anyone here have experience with whether or not to get a formal diagnosis for an 11yearold? My son very much fits the Aspie profile, including according to the online quizzes available - but we're leery of schools "labelling" him and treating him as a label instead of a person.

We've been working on just using the info to help him learn to cope better, but we're wondering if a diagnosis and such would help somehow.

I'm wondering the same thing. Austin shows all of the symptoms. He goes to a small private shcool and the teachers and administrators have been extremely understanding and cooperative so far. I don't know that there is even anyone in our area qualified to make an official diagnosis, so I don't know if its necessary. As long as his teachers and parents are aware and understanding and proactive about dealing with it, what purpose would the official label serve?

My wife has suggested that the official diagnosis may also serve to help him later in life; someday his wife, for example, may need to know about AS in order to help their children should they show signs of the same problems. Especially if he develops the ability to deal with it and learns to function just fine, as many aspies do; it may not occur to him later in life to consider AS when dealing with his own children. That makes sense to me, but I'm still not convinced its worth an official label in a permanent record.
Try to understand, the main object of your concern is your child. If the teachers aren't capable or willing to deal with his problem, check into other possible schools or even home school. My wife and I just made this decision last night, after a heart-wrenching day of learning more about AS and dealing with very loving and understanding teachers who, nevertheless, are not ready to help Austin and give him what he needs. The teasing and bullying cause so many other long-lasting problems that we just can't expose Austin to that environment any longer. Hopefully we will be able to work him back into that environment, but only after he learns a great deal about social skills and builds up all of the self-esteem that has been shattered over the past few years.
I know your situation is probably different than mine - you may not have the options I have. I'm just suggesting that your energy and efforts may be better spent exploring alternatives than trying to inform, educate, and pursuade your local school system to be capable of giving your son what he needs.

I have a 13 year old son whom I am convinced has Asperger's. I've tossed the same question around, too. Should I, shouldn't I get an official diagnosis for him. I don't want him labeled but I've decided it's very important for me to know for certain that that's what's wrong in case there's something else that I might have overlooked. Based on the things I've read I've learned how important it is for the person with Asperger's to have a name for what they already know is different about them. I want him to have friends and someday meet someone special that he can share his life with and be a good father to his children. If he doesn't know what it is that makes him different, he won't be able to help himself to the fullest and neither will I. Don't be afraid of a label. You don't have to tell everyone. Another thing I think about is what if I don't get the official diagnosis. What happens if he becomes an adult and it starts to interfere with work performance or something and he becomes unable to keep a job. How hard will it be to get my adult son with undiagnosed Asperger's to seek out the diagnosis on his own so he can receive SSI or whatever. Am I making any sense?

I have a son who is now 11 years old with (diagnosised) Asperger's Syndrome. I felt is was very important to have an official diagnosis. We went to several doctors over a period of two years with no diagnosis, but knowing "something" was different. We finally were referred to a Developmental Pediatrician. After a six hour assessment and armed with two years of prior doctors, drug trials, etc. he was diagnosed very quickly.

After getting the diagnosis we were better equiped to help our son. We were able to get our insurance to cover Speech Therepy to deal with the social issues instead of continuing with unsuccessful behavior therapy. He qualified for Special Services in the school and we had an IEP for him. He no longer has an IEP, but continues with a 504 Plan which will follow him to middle school next year.

"Special Education" does carry a label, but is certainly worth while if it helps your child. I will also say that in the elementary school the label has never been an issue.

I also think it was important for him to learn "why he is different" It helped his peers to understand him and some of his odd behaviors and gave his teachers some explaination too. I have found the teacher's interested in my son's "best interests" and more that willing to do anything that could help him achieve a better educational experience.

So, I have to say an offical diagnosis is very important. A diagnosis of Asperger Syndrome does not "label" your child. It is only two words. It is the actions you take after you receive the diagnosis that "might" label your child. I don't think anything bad can come out of getting a proper diagnosis. It only helped us.

I would like to say how important it is to get to the right type of doctor for a diagnosis. We were referred to a Phychiatrist and worked with him for two years. Then we saw a phychologist. At the same time seeing a behavior specialist. It wasn't until I talked to a second phychologist (specializing in children) that we were referred to a Develpmental Pediatrician. It was a six month wait to get an appointment, but worth the wait. We were seen by a team of professionals including the developmental pediatrician, a social worker, and a regular pediatrician. The team approach was thorough. I received a ten page report from them summarizing their impressions and diagnosis.

There it is, my two cents worth.

Lisa

I agree with Lisa. The diagnosis is incredibly helpful, for us as parents, for figuring out school struture, and I susect for him. But we are a very open family.
If your child isn;t having any problems at school (social, academic, or behavioral) then maybe you don;t need it.
The key question is WILL GETTING A DIAGNOSIS HELP YOU BE BETTER PARENTS? If so, go for it. It was a great revelation to me that after we got our son's diagnosis at 5, we realize nothing changed, not him and not our love him. But we did have an important tool to help him.
His difference was obvious. The diagnosi helped us understand why.
Good luck.

Just my two cents, but a diagnosis will probably make people treat him more seriously when he talks about having Aspergers. Don't let them drug him up, but do get an official diagnosis if you can. Otherwise people will raise their eyebrows and tell him he is only pretending to get attention. I get that often enough, from people who do not know me very well.

My son is almost four and we have been working for almost a year trying to determine what is going on. Autism Spectrum Disorder and Asperger's have been mentioned (though not by anyone qualified to diagnose him).

His biggest issue is that he doesn't play interactively with the kids in his preschool class. His language is somewhat delayed (and he's been in speech therapy once a week for four months now for that...making good progress). He tends to talk alot and often it's repeating scenes from favorite movies...that seems to increase around kids he doesn't know. If I say, "go ask Joey to play with you," he'll go ask, but 4 out of 5 times the other kid either says no or just ignores him...so I have to wonder if he's the one with the problem.

His teacher thinks that routine is important to him, but at home he could care less if we follow any type of routine. She says he lines up his pretzels and counts them, but won't eat them....he's never lined up and counted any food I gave him unless I suggested he do so... "How many goldfish do you have?"

I'm at wits end. One day I see something that screams autism or something like it, the next day I see five things that seem perfectly typical for his age to me!

How do you go about finding someone who is capable of diagnosing them to begin with? We're dealing with a psychologist now because that's what our insurance would pay for; but I haven't gotten the impression that he specializes in children or is PDDs so I'm not sure we haven't wasted our time.

Any wisdom??
thanks

No wisdom here but a thought or two.

Do you think your insurance would pay if the psychologist refered you to a child neuropsyschologist for testing? The psychologist is a professional. He or she should be okay with you asking for more testing. Ours insurance covered about 1/2 of our son's testing and it was very complete test.

The other option, although you'd want indepenent testing at some point, is to contact the school and ask for more testing via "child find" law. I assume the speech is via the school? At my son's speech therapist's recommendation, our school's "inclusion specialist" talked to our son and sent questionaries out to his teachers and to us. Our specialist told us that at that point he did not meet the schools qualification but that outside testing was probably a good idea.

Good luck to you!

I have been certain that my now-12-year-old daughter has Asperger's for a couple of years now, thanks to a friend who has Asperger's himself and also has a son with the condition. After describing my daughter's peculiarities (stemming from infancy), he said it sounded like classic Asperger's. I researched and researched, and I'm certain that's what's going on.

She's very high functioning, with a high IQ and gifted placement in school. I've used classic behavior modification techniques over the years to help with her avoidance of eye contact. She has a normal twin sister who is very socially adept, and I've enlisted her help since preschool to help with the lack of social skills.

But as we get further along in middle school, she's having to learn to deal with situations on her own. Fortunately she's a sweet kid, and she makes friends with other peculiar kids just fine. But the social situations are getting more complex, and I'm feeling that she needs better preparation than I can currently provide.

I've never mentioned the word "Asperger's" to her, but yesterday printed out an article for her to read. She read it, looked up at me and said, "I think this is me, Mom." I'm sure that she'll study this and figure out her own answers just like it's a math problem.

Sounds a lot like my son.

I went over a list of common Aspie traits and he decided he was an Aspie and researched it. His official dx, which came later, is PDD-NOS so that's close.

Invite your daughter to join the forum. My son participates in the kids' forum and sometimes reads the general and member only forums. It helps him to see there are others like him and that they are coping.

BeeBee

Sorry, it's taken me awhile to get back here to check for responses!

The psychologist basically said 'yes, there are some delays, keep doing speech therapy and add occupational therapy but don't worry with additional testing until he starts kindergarten'. I am NOT SATISFIED! To be honest the interview did not go well; although I thought Matthew did great.

He brought him into his office, which is very intimidating and not at all 'kid-friendly' and then did NOTHING to set him at ease or develop a rapport before sending me out. I was a little surprised that Matthew didn't mind staying without me, because of the way the Psychologist acted. But he did find, and the only thing the doctor really said was that he would not help clean up the toys when asked or take the doctors suggestions for how to play with the toys. Instead he wanted to direct the doctor in how to play and to continue playing rather than put away the toys...sounds like a very 'normal' four year old to me! Anyway, the doctor then misrepresented (or misunderstood) several things that I had said in his report. All in all, it was a terrible waste of time.

Our speech therapy up to this point has not been covered by insurance (that's $360 a month!) and is not available through the schools because the county that tested him says he does not qualify for services. His scores across the board in their evaluation were one or two points above the level at which they will offer services. I keep reminding myself that really is a good thing; but meanwhile his preschool teacher believes he needs services and continues to be very concerned with his social interactions (or lack thereof) in the classroom. However, when he's with us and meets a new child of similar age he can play with them for 2 hours!

His pediatrician has referred him to TEACCH in Chapel Hill for an evaluation for Aspergers. I'm sending the previous eval info to them and then they will schedule an intake interview to determine if they think he even should be evaluated...at least I feel like we are now making some progress toward an answer about what is up...if anything!

That's excellent that you are moving forward!

Its so frustrating, trying to figure out what our children need. I'm not frustrated with my son. but the situation and the lack of support from some areas.

BeeBee