Diagnosis Frustration

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Gosh, it's been a while since I have visited. Mostly because life keeps moving on. My grandson who is now 7 just underwent some more evaluations which have clarified nothing, but may help him get an IEP. The only agreement that people (professionals, family, community members) can come to is that he is different - neuro-diverse...but he doesn't fit in any of the current boxes that we seem to have created thus far.
In order to finally get an IEP, the psychologist at school put down a label of ADHD-NOS specifically stating that he really doesn't meet the criteria of ADHD in a stand alone category. She stated that he does score really high on autism scales but he is not autistic. She did recommend (finally) an ot evaluation because his visual motor integration appears to be finally testing as troublesome (although this has been a concern for three years now, he wasn't low enough on any tests to warrant a separate evaluation). IQ testing remains a strong average though it continues to be cautioned as an underestimate of his abilities. He has outgrown his global developmental delay diagnosis although it is evident that it still fits in speech/language and social/emotional areas plus the school didn't recognize it as diagnosis for an IEP.
On the up side, he has developed a new passion - legos! The house is now full of cars, animals, houses, and full scenes created mindfully. While he will follow the picture directions, he prefers to make his own creations.
Soooo...we continue the journey of raising and supporting a unique person..without a whole lot of guidance but definitely a whole of energy and love!

My 3 yo also tested high on the autism scale but still not high enough to get the diagnosis (though we are helping him to learn, as if he is autistic). He also has lots of little developmental delays. What are the autistic traits your grandson has or had? Also, what were his developmental delays?

If you have access to health insurance that covers a neuropsychologist or developmental pediatrician, you might want to consider getting a separate evaluation done. Find one that's covered by your insurance and see if they have expertise in BOTH autism and ADHD.

Schools are generalists, sometimes we're better helped by specialists. In my experience, we weren't able to figure my son's needs out until we got an outside evaluation (and they really weren't that complicated: pragmatic speech therapy, social skills classes, priority locker placement/line placement, more time in testing and a calculator, and breaks as needed.)

I am a woman in my early 50s, and remember playing with Legos when I was a kid. They were great fun! My younger brother is about 7 1/2 years younger than me. When young he was a brat. About the only thing we could do together back then without fighting was play with Legos. Even today, I am often tempted to get them again. They are a great way to explore one's own imagination and creativity, and a great way to spend time. Please encourage Lego play. It is definitely good for kids. There is a rival company that makes Mego blocks. These are cheaper than Legos, but I believe they will interconnect with Lego. However, Lego does make more different kinds of blocks, and I think, more colors, so it will still be good to get Legos, but then alternate with some Mega blocks as fillers, for things like walls. There used to be some blocks made by a company called I think, "Tyco", but I don't remember what they called their blocks. I think these were also interconnecting with Lego, but I don't know if they still make them. If they still make blocks, theirs are probably cheaper than Legos, too, so these could be mixed in also.

If the person(s) doing your grandson's evaluation don't have real experience with neurological conditions, including Autism/ Asperger's Syndrome, and related disorders, then his parents need to get an outside evaluation by a professional with experience in these areas. This will help in dealing with the school.

I hope this gets resolved soon.

Thanks all for listening to my vent...it is frustrating sometimes as we make this journey. For the curious, K has been an independent soul since birth so it seems...walked early, extremely curious, picked locks quickly...speech was delayed. Extremely sensitive to sounds. Not a cuddly one at all. Attached early to hotwheels and matchbox cars. Had to be placed in certain ways...by colors...in very long lines...for hours.. Always wanted more than one blanket..currently insists on 6 comforters to go to sleep. Never transitioned well from one activity to another despite the prep. Going into stores was way too much as a toddler..covering eyes and ears. Would take off and never look back. Yet overly gregarious with 'strangers'. When he was about 5 we started 'don't talk to strangers'...so he would go up to people and ask 'are you a stranger?' Passed all his screenings at Head Start..despite teacher complaints (he had been asked to leave a regular preschool because he would wander). Kindergarten...they lost him on the first day of school...he sought out a nice quiet dark hallway and was perfectly happy. His dad took him to the state university's specialty neurology clinic..they gave him the dx of global developmental disorder (social emotional and language delays - both severe). School said they couldn't use that to get him an IEP. First school psychologist found him to be in normal range IQ and not educationally delayed (ie. he was learning the goals for kindergarten). First grade came..he received speech therapy after being pushed into a full s/l evaluation. His grades continue to be average...No audiological issues (including processing)...although he absolutely positively refuses to respond to his mother. Will repeat 'rules' to keep himself in check. Things that work with him...art, proximity control, challenging him to figure out something mechanical...pragmatic useage of skills learned...having him read signs etc etc. A definite 'more than' child...lol

None of the reasons you've been given are a reason to deny a child an IEP. Schools are responsible to offer not only support but also intervention for kids with emotional and social delays. You should see if the state you are in offers free advocacy services, and request a meeting with your school and an advocate. (search "autism" in your state's department of human services.)

I have a suspicion that schools use these kinds of refuse-and-delay tactics to save money for as long as they can, but in my own experience they offered most of what we asked for as soon as we brought in outside help.

It took me MANY many professionals to get an accurate diagnosis for your son. It sounds like he has a lot of AS traits, as did my son, but my sons intelligence and charm outwitted the professionals every time! I actually took him to a therapist to start to work on some issues and see is anyone could help. THe 1st one was a bomb...he told me my son was insightful way beyond his years and he had no idea what we were talking about....the 2nd was a charm! She met with my son several times, LISTENED to what I was talking about as the issues at HOME...she didnt just go by my sons exceptional behavior in the office for 45 mins. She consulted with a psychiatrist, and then we met witht he psychiatrist several times. My son got the official Aspergers diagnosis a few months before he turned 6, but I have NO doubts that if I didnt keep going and going to professionals, he would still have no official diagnosis today.

Before I hit on his current therapist, he was in a special ed preschool, got speech, OT and PT. He has been in the system since birth due to his cleft lip and palate, and then due to his dev delays. Not ONE prefessional who ever worked with my son or knew him EVER mentioned ASD and they knew all about my son and his issues. He was very social, freindly, smart, made eye contact, etc...and I think those things threw eveyroone off.

I just knew in my GUT there was something more going on. I LIVE with my son, those people only see a glimpse of him in a very specific settings.

If your daughter isnt satisfied with the ADHD-NOS diagnosis, please tel her not to give up. Keep going until someone listens. I had no idea my son was on the spectrum going into finding a diagnosis. My son is mild, but getting the diagnosis has been life changing for all of us....

good luck!