How many wrong paths before correct diagnosis?

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We got sent down the "bad parenting / get family counseling" path. That was really the only wrong path we hit, and the counselor we worked with to humor the preschool that sent us on the path didn't take long to tell us that she saw nothing wrong at all with any us; my young son had gone through some stressful changes and the things we worked on with her were, to her, logical reactions to those changes. Oh, and she felt the preschool had mishandled our son and that that was part of the behavior issues the preschool saw, as well. That was all nice to hear, of course, even if the AS remained hidden; AS at that age can be really hard to see accurately and I don't fault her or the outside experts she had do observations for missing it. We did get useful progress on some important issues, so it was not wasted time, even if the reason for starting with her was completely bent out of shape.

After that, while my son was still in preschool, we did an observation with a psychologist from the school district, who was able to see the sensory issues but not enough of anything to want to put things into his school files before he had ever started. Still missed the AS, but getting on with the sensory issues was a solid step. And, again, I'm not convinced the AS COULD have been accurately diagnosed at that point. I considered her input to be, overall, helpful and not a "wrong path." Just an incomplete one, but that was appropriate to the age and stage.

The next attempt to identify issues came in first grade, and while that track was really slow, it progressed steadily to the diagnosis of AS and co-morbids in the hands.

I consider us really lucky, actually. Our road wasn't that bad.

I was misdiagnosed with ADD when I was ten, and only got my Asperger's diagnosis after my first semester of college (things fell apart, but not for the typical reasons). My mother actually researched Asperger's when I was seven, but the emphasis on social troubles (which I have barely ever had) turned her off the trail.

The same thing can happen with professionals, especially with something as varied as autism spectrum disorders. Unless a doctor has previous experience with them and how different each person can be, it's very easy to think "well, he doesn't have this particular trait, it must be this instead".

We have taken our ds, in the past ten years, to developmental pediatricians, psychiatrists, counselor, naturopath, Biblical counselor and neuropsychologist. Oh, and OT.

We've been told:
SPD
"inflexible-explosive"
probably ADHD
OCD
language disorder
bad parenting/defiant kid


Finally got the Asperger diagnosis last month. Our son is now a teenager. He's a wonderful, bright, creative, caring, interesting kid. He's also been through a lot of struggles, a lot of frustration, and a lot of judgment from others. We're still trying to wrap our heads around all this new information; so is he. I hope ultimately he will understand his strengths and weaknesses, and accept our help (and counselor, etc.) to work on the weak areas as well as maximize his strengths.

Jane

I'm hoping someone can either relate to this and possibly point me in the right direction.

My son (my step son that I've raised for the past 10 years) has been on an IEP for the last 6 years and had academic testing done 3 years ago in grade 6. Over the last 2 years I've noticed different signs of him not being shall we say at the same age level of his peers. I finally was getting so frustrated parenting him among other things I started to see a psychologist. In April 2010 I took his academic testing report to her and as she finished reading the first out of 15 pages she said I need to get him tested ASAP for Aspergers. So here is my dilemma,

I spoke to his high school principal (new school completely freaked, not sleeping and hardly eating. Insanely worried about not having friends as 1 of 2 friends just recently "ditched" him) and was told that he should be re-evaluated for academic reasons and if the psychologist there thinks he should be further tested there will be a referral put through for that. He also said that I CAN NOT ask for specific testing. I'm putting him on the wait list regardless and this probably wont take place until the spring.

I spoke to his SPED teacher in June regarding my concerns and was told "well isn't Aspergers on the Autism spectrum?, well he can't have that because he socializes!"

Our family Dr. has no problem sending out a referral but in Toronto, ON it will take until December just for a consultation and possibly not until next summer for actual testing to be done. He's also on this wait list

Private testing here is between $800-2000, I'm currently on MAT leave and can't afford this right now.


Does anyone have any suggestions how I can speed this up? Am I asking to much or expecting things to happen to quickly? When a child needs help like this how do you just tell them to wait. Its getting scary now, I've taken him back to our GP because last week he came and told me "you know what mom, I think if I don't make friends its really just better to die". How to I continue to watch my child hurt like this without help for him.

Sorry for ranting, I just feel like I'm running in circles everyday.

I can't offer much advice as my son is only 5, but it sounds like your son's school needs to get educated on Asperger's. In the meantime, I would definitely take your son to a psychologist to discuss the feelings he is having, and maybe try to find some social skills classes for him to get into. It sounds like the poor boy is under a tremendous
amount of stress. I think if you talk to him and tell him that you love him very much, and you know he is struggling and that you are going to do everything you can to help him, that may help him too. Hopefully, others with more experience here can offer more advice.

Hang in there! You have come to the right place! Welcome to Wrong Planet!

P.S. It might help to start a new post on this with your own heading since this is an older post.

Thanks, I did!

Mine wasn't a series of misdiagnosis. Mine was more of finding a doctor that would go with me on the fact that there was something more. At 2 1/2 he was reading, and had a good vocabulary. it wasn't until right after his 5th birthday, I went to his yearly check up, and I told the doc that I wanted him evaluated for autism. The doc looked my DS over, and asked him a few questions, and said he didn't think my son was affected, but he wrote me a referral to a speech clinic. After he attended a few months, the speech path told me of this great clinic an hour away from where we live, no referral needed, just needed to get his php to approve the insurance. When I told the doc that I needed them to do this, he got insulted, and said that he didn't see anything wrong with my son, which I replied, I guess you don't, you rarely see him.
I had been asking for referrals since he was about 2 and reading the letters of the alphabet, and had memorized the name of shapes, even the harder ones like a rhombus and pentagon, and knew the difference.
So when he went to the Clinic for Special Children (which by the way are great clinics, and they are all across the US), Dr.Harem saw him, and had us fill out paperwork, and a book of questions. By the end of our appt, she had told us, in her professional opinion, that my DS had HFA, and had formally diagnosed him that day, after a few more sessions she co-diagnosed him hyperlexia.
But mine wasn't a point of alot of misdiagnosis, but just finding a dr who took me seriously. The next day after his diagnosis, I went to his dr office, and requested his medical records be transferred to another doctor, when they asked me why, I told them that I didn't feel that the doctor took my concerns seriously, and that I thought he would get better care for a doctor who would.

PDD at 3 and Autistic by 4. Pretty much went through everything Vanderbilt wanted him tested for,genetic wise too.... We have been fortunate because they got him into services right away.