Undiagnosed and Misdiagnosed Aspergers

One of the worst problems is that you can never really understand what is going on inside your youngster's head. This makes it so difficult for you to understand his behavior. This can leave you feeling emotionally beat-up and completely useless as a parent. You may have to cope with crisis on a daily, hourly or even minute-by-minute basis.
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Kathleen Blackmon said...

My 7-year-old son has been having violent fits for years. At the age of 3 he was diagnosed with ADHD. Over the last 4 years he had also been diagnosed with ODD, Mood Disorder (unspecified), Anxiety and Depression.

In doing my own research I came across Aspergers and asked his Drs about it. They all said no.

I had to have him committed to an in-house mental health facility this past week for violent behavior toward his younger siblings. He's been suspended 4 times in the past 30 days from school for violent behavior.

Now that he's in-house, the Drs are saying Aspergers. Is this normal that a parent can come up with a diagnosis that is thrown out or ignored and then years later the Drs catch up? I'm very upset that he could have been getting the correct help years ago instead of having to go through all of this.

Erica said...


To answer your question in one word... yes. Many parents that I know have gone through this same thing. A parent is the expert on their child. It is very common for the parent to know what's wrong with their child before the professionals do.
I personally understand what you are going through. My 12 year old son was like this. At the age of 6 he was diagnosed with ADHD. For the last 6 years we have had difficulties with him(on and off). He has had so many diagnoses such as ADHD, OCD, ODD, and the latest being Bipolar NOS.
I'm so frustrated at all of these so-called professionals. For a long time now, I have believed that my son has Asperger's syndrome. Everyone says no. The dr.s that have seen him have spent no more than 30 minutes with my son before diagnosing him.
The developmental neuro psychologist that just diagnosed him with bipoloar nos had his assistant spend 2 hours with him doing motor skills testing and had me fill out 8 papers about his behaviors. He overlooked so many of his Aspergerian traits.
You, as the parent, know your child best. I'm still in the middle of a war with professionals. I know my son doesn't have bipolar nos. His agressive behavior has always been brought on for a specific reason. His moods don't cycle and he has never had any sleep problems. He shows many, if not all, of the symptoms of Asperger's syndrome. We also have a family history of Autism and Tourette's.
So, needless to say, our battle is ongoing. I wish you the best of luck with your son.

Anonymous said...

My 12 year old daughter has so many Asperger Syndrome characteristics and I have a brother and an uncle with the disorder. My daughter has been diagnosed with ADD, Anxiety dsorder, Oppositional Defiant Disorder (the one that angers me the most), and been looked at for possible bipolar disorder. I have brought the family history and her matching criteria (overwhelming) to her school psychologist, pediatrician, and two psychiatrists, all who wave me off without even considering what I'm suggesting. Now this child who tests 3 grade levels ahead has 2 F's, 2 D's, and a C, has no friends outside of school, and the whole house is miserable. I'm at a loss to find someone to help or even attemp to properly diagnose her. Anyone have any suggestions?

Anonymous said...

Thank you for this link. My son has been diagnosed "officially" for about a year and a half, but I sought help for us about four years ago. I understand the Asperger's stuff I read, but I still never quit understand what in going on inside his head. Just when I think I understand something, something changes.

Anonymous said...

Luckily as an AS single parent of an AS daughter I don't have this problem so much. We have some differences, and I feel like I've outgrown the most crippling aspects of AS due to a really good alternative high school education, but I know what it's like for her. We're a perfect team in some ways, but in others we are totally at odds... I have major tactile and auditory sensitivities, she is hyposensitive and loves to invade my space and torture me because no matter what, I really can't avoid going completely NUTS if someone screams in my ears or touches me too lightly. It sucks!

Paul said...

My son is now 27 , but did not recieve a diagnosis of Aspergers until after he was 19. Prior to that, he was ADD, ADHD, Oppositional Defiant, BiPolar, and Schizophrenic. A complete psychological/neurological evaluation was never performed until he was 19. At the time, AS was not known about and most doctors did not want to take the time to perform any lengthy evaluations. In addition, AS preseents many of the same traits as ADD, ADHD, and BiPolar. Terry has been in the hospital more than 20 times for violent outbursts and on 4 separate occasions, the police had to be called to subdue him. Luckily, the police would take him to the hospital and not to jail. As parents, we know our children, but also, we can be biased and that is why some doctors do not give much attention to what the parents say. You have to keep up with getting the doctor to perform the evaluation or keep trying new doctors that are willing to listen. Unfortunately, any misdiagnosis can also cause mistreatment. While my son has AS, he is also bipolar and hypothyroid. Any change in medication for one, affects the other. It is a balancing act that my sons current doctors and therapists keep a very close eye on.

Laci said...

my 14 yo girl was misdiagnosed with aspergers when she actually has social anxiety disorder

LOSTDADandMOM said...

***Lost need help****
We have a 4 yr old son. He is a wonderful boy as all ours are. He is in preschool now. He has exibited anger issues he will hit scream kick at his mother and I at home. Typically he will have been put in timeout at school for hitting or pushing. We decided after several outburst very close in time to seek professional help. both being open to counsel we went to our first visit, his mom and me first time basic info etc. But she did offer an opinion of possible ADD/ADHD. both knowing htat probably wasnt the case. after her first visit with him and another outburst at school, we had a Emergency meeting with her. Her opinion this time is Asbergers. I have reserves about 2 visits and 2 diagnosis, however being a highyl concerned mom and dad we are open to researching and doing what we need to do. I have been reading into AS I see him qualifying for maybe 2 or 3 categories, but most of these categories are not addressing the anger and sometimes rageful behavior he exhibits. Could AS being or ADD etc be misdognosed for a true anger aggression development issue. Trult lost a Dad looking for direction...thank you

mylilfamily7 said...

My 9yr old son, Im certain, has Aspergers. I'm lost! He's the eldest of our 5 children & its a constant battle. It's very time consuming & you need lots of patience. His dad and I have, until recently, thought it was attention seeking, and just him being 'a naughty boy'.
But my poor little man doesn't comprehend...I don't know, its like nothing sinks in...instructions (like keep your hands to yourself, get dressed, was hands etc).
I feel guilty because I can now see in his eyes that he doesn't do this on purpose....he has no control over it. And the time outs hes had & being in trouble all the time..i feel like ive let him down, i havent understood him like I should have :-( I'm worried as I don't know alot about Aspergers (have been non stop reading about it though).
His dad isn't as patient as me, and doesn't understand as much...probably lack of knowledge.
He's very smart & friendly, beautiful nature, but constantly hassles & is violent toward his 5 yr old brother....& now with his sisters too (even the 2.5yr old).
I'm not a believer in medicating kids but every day is getting more of a struggle, is affecting the whole family, his dad & my relationship, his grades are starting to drop as he's falling behind...not completing tasks, not listening & lack of concentration.
I'm just lost..asking for help, ideas, do I just go to GP and voice my concerns, opinions? This has been going on for years but has become ALOT worse & FULL ON in the last 6 months....
HELP PLEASE..someone who understands, can relate, anything...

Unknown said...


This thread is very old, but I'm posting anyway in the hope someone will see it. I am searching for someone that works with diagnosing adults with Autism for re-diagnosis of my 18 year old daughter. She was diagnosed with ADHD-NOS at age 13 and the evaluator indicated in the report “Savannah has an unusual presentation which warrants continued monitoring for emergence of more severe psychopathology.” The evaluator verbally indicated to me that "something more" than ADHD was going on, but she wasn't sure what. My daughter's therapist at the time said she believed the evaluator saw potential schizophrenia in the future (my daughter was very un-grounded and never seemed to know what was going on). The evaluator's recommendations read like something one would get with an Aspergers/HFA diagnosis.

When she was 15, my daughter was re-evaluated because she was self-injuring and having suicidal ideation. This time the diagnosis was ADHD-Inattentive Type and Major Depressive Disorder. Over the past 4 years, she's been on a 504 Plan at her high school for her ADHD, but the issues she has do not fit with the ADHD accommodations. She has sensory issues and trouble communicating, unless she has a close relationship with her teacher(s). She has been placed in special programs with smaller class sizes and fewer teachers, and she thrives! When returned to the regular classes she tanks again and comes up with headaches, stomachaches and fatigue as well as anxiety. Freshman and sophomore year, When she was really stressed she would do ballet spins and unconsciously singing out loud. Her therapist said they are "stims." She also has no friendships outside of school, but many friends (acquaintances) at school. Her friendships fizzle out because she rarely initiates anything with them. She only responds IF someone asks her to do something. She has a boyfriend now and was overwhelming him mainly because she has no friends. She asked if she could re-start CBT again a few months ago due to the issues she's causing in their relationship.

She is on her 3rd CBT therapist since 5th grade because the 1st 2 said she had a "wall" or was "blocked" and they couldn't reach her. Her 3rd CBT therapist stopped services after their 2nd session a few months ago because she said "Savannah's participation indicates that she's obviously not open to this" even though my daughter requested starting up again. I explained to the therapist that my daughter doesn't know how to communicate and the therapist agreed to try again. So, now I sit in on all the sessions and act as a conduit or facilitator because I know how to draw my daughter out. However, the CBT is now causing my daughter anxiety and thus, she has been placed on an SSRI.

My daughter is 18 now, seems terrified at the mere mention of driving, can't bring herself to go on a job interview, and is overly dependent on me and her boyfriend. She does not like to do anything alone. She won't leave my condominium complex unless she has someone with her; she has only walked somewhere alone once in her entire life and I was on the phone with her while she did it. She won't even call and order a pizza or Chinese take away and if I push her to do it, she just foregoes the pizza, etc. She wants to go to college in CA (we live in IL), but only if me and/or her boyfriend move out there with her. She had a panic/anxiety attack when I tried to talk to her about going by herself AFTER we visited the school and spent a week out there.

I believe she has Aspergers or HFA and is misdiagnosed. I feel like I failed her as a parent because I know she missed out on autism therapies which could have helped her. I would like to get her re-evaluated as I believe she could use the autism vocational therapies for work, college and independent living. Does anyone know of an evaluator who specializes in adult HFA?


Jump said...

I honestly believe there is a deliberate attempt by health professionals to avoid autism diagnosis in children so that they can avoid having to fund the (expensive) treatments. Once they reach adulthood, these patients are on their own (at least where I live) and access to most services is either stopped entirely or has to be paid for privately. And most undiagnosed adults with autism do not have the funds to support themselves let alone pay for the treatments required to start a functional life where they could realistically hope to earn that sort of money.

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