Get my 5-year-old tested for autism/Pervasive Developmental Disorder (PDD)?

LovinMy6

New Member
Hi, I am mom to a 5 year old who was diagnosed with a severe speech delay at 32-33 months old. His only real word was "ma" (mom). The rest of his communication consisted of noises, sounds and often high-pitched screaming. They thought he had Childhood Apraxia of Speech and gave him 13 months of speech therapy. He still is hard to understand at times, pauses frequently in the middle of speech, and is resistive to using complete and full sentences. For example, he might ask "Why you not going to store?" or "I not want that" or "Me said that" He rarely if ever uses words like "the" "am" "are" and other "unnecessary" words.

When he was a toddler, he would often not respond to entertaining stimuli. For example, around 18 months he went to Disney World and would just sit there with no expression or reaction even though entertainment was all around him. No hand clapping, no smiling, no laughing, just sitting there with no response. We also thought he may have had hearing damage because he would usually not respond to us calling his name, and if he did, it would be after multiple tries. We still struggle with this a little, but not as much as back then.

Since he has gotten a little older, I have noticed that he does not really understand some of the things that we say to him the way that he should, even though he seems to have average "book" intelligence for his age (can count up to 12, can add numbers up to five in his head, can identify 100, 200, etc. and knows letter names). He has a hard time grasping that we are not "playing around" when we are upset with him, and he seems to not understand why he is being punished even after we try to explain it to him.
He is not around other kids (besides his brothers and sisters) much, but when he is he either plays by himself or is aggressive. If another child tries to play with him, he gets mad and yells about them touching his toys.
If he wants me to go look at something he will push or pull me toward it and he tries to get my attention when he is talking to me by poking me, sometimes directly in the face. He is not doing it to be rude, or mean, or funny, but just as a hey mom, I'm talking to you and sometimes will even say "Mom, me saying something" when doing it. He also has a habit of getting right up in my face when trying to talk to me and cannot grasp the concept of "whisper" even though he tries really hard.

His main fascination in life is cars. From 18 months to about 3, he would spend a lot of time just lining them up, instead of "driving" them. He now plays with them properly, but he is basically "obsessed" with them. When we go somewhere, he wants to take them. If I say no, he talks about going back home so that he can play with them. It is all he asks for every birthday and Christmas. As a matter of fact, his main "sound" before he could talk was the “hard C” sound for "car" and he would also make a motor noise. He will often go on and on about cars, even if the person he is talking to doesn't care or isn't listening.

He has some sensory issues. Sound is a big one. I CANNOT take him to the movies. Just can't happen. He often covers his ears to ordinary sounds like the vacuum. He will usually squirm away and say "Mom, you on me" when I try to hug him. His hair is long enough to tuck behind his ears and if I try to, he immediately untucks it. I know it doesn't sound like much, but it seems odd for him to do this every time, without fail, for the past 3 years. I don't do it to annoy him, but I will always do it, without thinking, as a sign of affection. He has always been very picky in what he will eat. He would prefer to go without food rather than eat outside of his comfort zone of pasta, pizza, crackers/chips, yogurt/ice cream, oatmeal and select cold cereals. Also, he is very sensitive to temperature, especially water temp. I cannot give him and my oldest son a bath together because he has to have the water very mild (too mild for my other son to comfortably bathe without being cold) or he freaks out and yells that it is burning him.

I think there are a few things I am forgetting, but these are the main concerns that lead me to believe that CAS was not the right or shouldn't have been the only diagnosis. I did do an online autism/Pervasive Developmental Disorder (PDD) assessment, in which he scored 126. He learned a good bit of communication skills in therapy and can now interact and play with his own siblings, as well as communicate verbally, but his social and communication skills still seem to be at or below the level of my 2-year-old's skills (which are higher-than-average, but more like a 3-year-old level, not a 5-year-old level).

Since he is not school-aged yet (December b-day) I don't know where to take him to get this type of assessment. Where do I start?
 

Ktllc

New Member
You can go to your school preschool program. All school districts have a special need department for preschool age kiddos. The school district can test him for free. If he is challenged enough, kind of clear cut diagnosis, they should be able to offer services.
If he is like my son (not clear cut), you can go with private testing by a neuropsychologist, developmental pediatrician or a phd level psychologist. An Occupational Therapist (OT) specialized in sensory integration can also test him and offer some help.
You can also decide to do both: school and private testing. Keep in mind that waiting lists can be long. So put your son's name on it right away.
It is not easy to organize all the necessary evaluations but it will be very helpful to your son and family.
Problems like the ones you describe don't disappear overnight. It does not mean that he cannot have a bright future. It just means that he probably will need more help than most kids and that is ok. You have found a great place to seek advice.
 

TeDo

CD Hall of Fame
The school can tell you if he meets their criteria for services under the Autism category. Then you would "know" but it wouldn't mean anything outside of school. For it to be considered a legal, medical, insurance-covered diagnosis, you need to have him evaluated by a professional. Many of us highly recommend Neuropsychologists but if that isn't possible, a Developmental Pediatric team would accomplish about the same thing providing they are reputable. Both can usually be found through a large children's hospital. If all else fails, a PhD level psychologist with a good reputation would also be "acceptable". He sure sounds spectrumy to me too based on what you've described. Find someone that knows what they're doing.

Good luck and welcome.
 
Top