Son misdiagnosed with ADHD, it was mild autism

Kathleen - posted on 11/19/2010 ( 10 moms have responded )

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My son was diagnosed with ADHD when he was in first grade, he had all the symptoms of ADHD and we began treatment with meds. Over the years he has struggled in school both academically and socially. We really began to notice that he was not on the same maturity level as other kids his age. He was constantly needing to be supervised with everything, even with his medication. So we spoke to his specialist for ADHD and he talked to our son, and within a few minutes stated he was referring us to have him screened for autism.



Autism has a very wide spectrum, at the mildest end you have Asberger's Syndrome, which is highly functioning autism with mild autistic symptoms. At the other end of the spectrum is what most people visualize as autistic, totally withdrawn into their own world. My son, is lower functioning than a child with Asberger's, his maturity level is that of a 5 or year old and his comprehension of some things is at a 2 to 3 year olds level.



My point in this is to let everyone know that ADHD or ADD symptoms are also very similar to ASD (Autism Spectrum Disorder). If you child is showing signs of social problems, maturity level not age level, plays more by themself than others, and has emotional melt downs a lot; you may ask your doctor about ASD just to make sure. We just thought that he was being rebellious and was being uncontrollable or his meds were wrong...We we WRONG. He now requires a whole different type of treatment and understanding, not to mention the schools have to deal with them diffently than IEP's or 504's for ADHD. They have to provide more services.



If anyone else has had this happen please let me know and how you are dealing with it, my son's diagnosis is still new and we are trying to cope with it all. Any help would be great!

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Laurie - posted on 06/08/2013

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Two words: Neuro-psychologist. Preferably one that specializes in children. I've had a similar path with my son - we just thought he was a bit quirky as a young boy, he had some delays, but we figured as long as he was progressing, he was ok. He was severely bullied in an inner city school from 1st to 4th grade and we attributed a lot of his progressing problems to the bullying and dismissed the teachers along the way that suggested ADHD. We're high energy, so we weren't surprised that he had a lot of energy. In 5th grade we moved him to private school, in a safe christian environment and figured things would begin to work themselves out. We considered ADHD as a possibility, even though it didnt feel quite right. All of the assessments between us and his teachers pointed to those symptoms and his Dr. diagnosed ADHD. We tried adderol, he had a violently emotional reaction to it within a weak. In hindsight it all makes sense. We stopped the meds, sought help at Children's hospital and still found no real answers. We were discouraged. We tried several counselors, no good fit was found. We spent $$$ and still had no answers. Finally this year when our son was in 7th grade, we all hit a brick wall. 7th grade has enormous challenges for all kids, but especially those with issues. I began researching cognitive function, because I noticed my son was fine with black and white material, but struggled with inferences, deductions, etc and thus I thought that perhaps his delays were cognitive = his brain wasn't mature enough. Only a neuropsychologist can run the assessments and observations needed to provide a full report on cognitive brain function. It wasn't cheap, but it was worth every penny. His brain works fine - in fact he should be a top performer based on brain function, and yet he isn't. What became overwhelmingly clear in all of the testing and assessments is that his social/emotional maturity and blindness to social customs and emotional insight was dominating his ability to tap into his intelligence. The diagnosis was mild autism spectrum disorder, major depressive disorder (a result of being misdiagnosed, misunderstood, and undiagnosed all these years) and general anxiety disorder, common in those with autism. KEEP SEEKING HELP and FOLLOW YOUR INSTINCTS. And most of all, find the exact professional you need to get the answers you are looking for. No one explains this to us moms, we have to learn the hard way. Neuropsychologist = study of the brain in relation to behavior, emotional, physical & learnng problems, cannot provide meds. Psychologist = study of behavior and provider of behavioral services & IQ testing, cannot prescribe meds. Psychiatrist = can prescribe meds and conducts some types of therapy. Therapist = counselor. If I had only know years ago that I needed a neuropsychologist, then I would have started there and saved myself all this heartache. It is not ADHD if the cognitive brain is functioning at average/above average levels. Good luck out there.

Dawn - posted on 06/27/2012

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Different meds act differently on ADHD kids. They put my son on Adderall and he went from HF autistic to more classical. The doc kept wanting to up the dosage, I wanted him off. Finally after much fighting he was switched to strattera--non stimulient. It only takes the edge off his adhd, but he is back to "normal". As it is summer cant say what will happen in school, but he is nolonger running into walls or diving off the back of the couch so for now Ill take it.

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Denise - posted on 07/30/2013

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This was very helpful. My now almost 8 year old was diagnosed with PTSD, OCD, ADHD because of his hyperness. His maturity level is that I believe of a 5 or 6 year old, constantly having temper tantrums with rage. I feel it is because he has been misdiagnosed. thank you for helping me.

Lisa - posted on 02/13/2013

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My 5 year old son was diagnosed with ADHD in October of 2012, his Dr put him on Adderall XR, he started him on 10mg. After being on Adderall for about a month the Dr decided that it might be beneficial to up the dosage because he was still having similar issues, we did and around the beginning of December 2012 I noticed that he was very emotional, crying at the drop of a hat and having outbursts if you asked him to put his coat on. I did a little research, spoke with the Dr. and decided that I wanted to change his meds to Concerta, the Dr started him on 18mg of Concerta a day and now almost 2 months later, he is behaving like he is not on any meds, constantly talking or bouncing around. His teachers are now concerned because he has fallen way behind the other students in the class due to his behavior and having to be removed from the class constantly. I have always been concerned that may not actually ADHD but haven't had any luck convincing the Dr's that he needed further testing, they say it's the meds and that finding the right one is trial and error. I never thought that being on the Autism spectrum was a possibility.

Sandra - posted on 01/18/2013

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We have gone through 2 evaluations so far. Both have said ADHD and Anxiety Disorder-NOS. My husband and I strongly believe that our son has ASD. We are currently on a waiting list for another evaluation and I am getting ready to send papers in to another place to be put on another waiting list. We just started medication (Adderal XR) this morning. It's extremely frustrating because although the meds have kicked in a little (able to focus a little more) he is still all over the map (climbing, running around, ect.). So we completely understand your frustration and wish you all the luck in the world!!

Cherish - posted on 06/24/2012

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Hi,
My youngest son has severe autism as well as other medical/developmental issues.
If you have a child with a dx of ADD/ADHD the school STILL has to provide services via a IEP/504(whichever is more appropriate)
My favorite books re schools and parents/children's rights are:
"the everyday guide to special education" and "from emotions to advocacy".As far as ADHD and behaviors "the explosive child" ,"driven to distraction" and "the out of sync child" are excellent books.
Often kids with ADHD have sensory issues,that can effect how they learn.So school would maybe offer OT or a BIP.You do not need a autism or ASD dx to get services at school

All 3 of my kids have ASD,my oldest is 19 and I have been fighting with schools for years.
Know your rights and then don't let up.

Ashley Brooke - posted on 06/14/2012

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I am in the same exact boat you are or was in. My son is 6 yrs old has been diagnosed with ADHD but all his life has showed signs of autism. Had been taking meds for 7 mths..i took him off after school ended bc i hated the meds he was taking. I DEFIANTLY think he has adhd but there are a few other things that are not right with him that has nothing to do with adhd and everything i look up that pertains to the problems hes having ALL lead back to autism. So im confused to as if he could have both or if he was wrongly diagnosed. EVERYTHING you said about your son is the exact same way my son is. Ive noticed since my son started school that he was not as mature as the other kids are..he struggles some academically but much more socially and emotionally! He can learn like other kids his age, he just has to learn at his own pace which means he takes a little longer than those his age, but socially he has the mind of a 3-4 year old. He has to CONSTANTLY be supervised all the time and i have a newborn baby that i have to keep a close eye on when my oldest son is around. I feel like im living in a nightmare bc of everything i have been through with my son but he is the one living in the nightmare and suffering more than i am and i want to end this for him and get him the help he needs!! It makes me very angry that he has saw a phycologist for 4 yrs on and off and here he is 6 yrs old and they still dont know whats wrong with him and without knowing that they cant put him on the right medication!! Thats why i took him off bc adderoll XR isnt what he needed and i want put him back on till i get the right diagnosis..i dont care if the schools complain they cant do nothing with him..they can deal with him just like i do untill the doctors figure out what he needs instead of just "trying things out" is what i call it..LOL my phycologist sounds about like yours, she had a couple sessions with him and asked if i would consider meds and just wrote up a prescription and problem solved for her and the school but problem not solved for my son! Good luck with everything and i hope all is well...just know you are not along we are going through the exact same thing!!!!

Emma - posted on 04/04/2012

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Hi my son was diagnosed ADHD last week and I started his gradual meds yesterday(ritilin) his twin is on Dexampetamines and also has mild asbergers, Christopher had the opposite reaction to what the meds are supposed to do, speeded him up to a scary for us uncontrollably talking, twitching mess!! I am not giving any more, unroll advice from peadiatrian next week but I am anxious to know if my son was wrongly diagnosed, or is in need of other meds, any advise would be apprieciated .

Sarah - posted on 03/07/2012

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Oh my goodness, it's like we are living the same life ! My 7 year old got diagnosed with ADHD last year but after having a speech assessment done we have discovered that he has a Pragmatic Speech Delay which is indicating Autism. It was only after doing a bit of research myself, that i have realised how often Autism is misdiagnosed as ADHD :/ I am feeling very frustrated at my Peadeatrician at the moment, not because of the misdiagnosis, as i understand she is only human, but more so because she came to the ADHD conclusion after one session and prescibed medication straight away, which of course didn't do a thing. Not sure why she didn't screen for Autism in the same session as i thought it would be mandatory ?

Sarah - posted on 11/28/2010

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hi having similar problems going through process of diagnosis and so frustrting pediatrician is saying no to aspersgers and asd but yet the cahms place thats assessing him are swaying to aspergers and asd. just need answers he has terrible trouble at school everyday he is sent out the class sometimes up to seven times a day for hitting other children and various other things, he has trouble a lunch time really struggling within the playground and is having trouble with his sounds to letters and words he is angry and aggressive and has meltdowns over small things so i know the understanding that many symptoms can cross over to other things so getting the right diagnosis at the beginning is vital.

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