Unhappy with assessment of my 2.5 year old...

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Hello, I've been lurking for a few months, but I'd like some input on my 2.5 year old son. He is currently receiving therapy for his play skills and sensory issues (mostly touch-related) through Early Intervention. Today we had an "autism assessment." I was expecting a thorough ordeal, but it consisted of only a handful of play tasks and the whole thing lasted about 20 minutes. Afterwards the guy told us that he scored a 1.5, and that a 2 is required to be "at risk" for autism. He didn't ask us about any of our concerns, basically called us insane for thinking our son may be autistic, and dismissed the fact that my son was spinning in circles the whole time we were talking. Is this a typical experience with EI services? Am I supposed to try to forget everything I know about autism because of this 20 minute test? What do I do next?! I'm going to attempt to list some of my son's behaviors that I believe point to autism, if anyone would be kind enough to give me their opinion I would really appreciate it.

-Delayed speech. At 2.5, he is just now starting to say the very occasional two word phrase.

-Doesn't like pretend play. For instance, at his last play date, the little girl was cooking in her pretend kitchen and trying to involve him, but DS was only interested in opening and closing the cabinet doors over and over again.

-Limited interests. For the past year he has been completely obsessed with The Legend of Zelda video games (he saw his dad playing once). He would watch video of game play on YouTube all day if I let him. He has a 200 page book on the history of Zelda that he looks at many times a day, and always ask for when he is upset.

-His other main interest is letters. He knows all of his upper and lower case letters. He points out letters everywhere, and counts how many of each letter are in a certain word or book title. All day he is saying "two O, three E" etc. He can be read to for an hour easily, without losing interest (but only his favorite books, he is resistant to new ones).

-He is always looking at things out of the corner of his eyes and at weird angles. He walks on his toes quite often, and likes to walk around and around in small circles (especially when he is bored or stressed).

-He is typically very resistant to social interaction, and pretty much shuts down if more than one or two children are present. He runs from kids at the playground. He usually cries if anyone other than his father and I try to touch him.

-He has lots of sleep issues; has to tap my elbow until he falls asleep, wakes often, can't go to sleep alone, etc. We only recently were able to get in to wear shoes and socks, and he still takes them off after a short time, or if he becomes tired. He won't tolerate a blanket, no matter the weather.

-Has to have things a certain way. He freaks out if I leave the closet door open, if his dad doesn't have a shirt on, etc.

There are other things, but that is probably a decent start. I just want to make sure he gets a diagnosis if he needs one. I am fairly certain that I am also on the spectrum (am seeing a psychologist on Wednesday), and I really fell through the cracks as a kid, and was very miserable. I don't want that for him, and I feel like a diagnosis would be a start at preventing such misery and getting him whatever help he needs. Of course, I could just be a basket case, and totally imagining all of this, as the evaluator today would have had me believe! I would be very grateful for any thoughts or suggestions that could be helpful. Thanks!

Do you have health insurance? I'd recommend doing an end-run around the school, have a private assessment done, and then ask for an IEP meeting and a reevaluation.

You may simply have run into the school gatekeeper. Some individuals at schools feel that it is their job to make sure the neediest kids are served, and to keep the school budget from being negatively impacted.

Trust your instincts (and folks, remind me to say that to the next person who posts who says they DON'T think their child is on the spectrum.) Schools are generalists. You are a specialist in your particular child. What you've written sounds to me like issues that need support - what they call them is less important than that they get attention.

I would start by copying the list of concerns you've written here into an email that you start by saying something like "Thank you for your assessment. I noticed that my child was having a particularly good day the day you saw him, and I'm concerned that you didn't see what I am seeing, and what I'm hearing from ______________________ (teachers, relatives, friends) for instance:"

After your list, state "Since I would feel more comfortable with a full assessment of my child, I have scheduled a meeting with ____________________________" I will be happy to get back to you with the results. In the meantime, feel free to contact me at ____________________________________________.

Copy your child's teachers, the immediate school administration and the next level up person in the social services department. If you don't hear from them within a week, resend the same thing via snail mail, get your assessment with a developmental pediatrician or a pediatric neuropsychologist and ask if they can come advocate for you at the school.

Good luck! Keep us posted!

When he was an infant, did he look at your eyes and face and mimic you or did he avert his gaze and look at something else like a window or other light source? Did he smile easily or did he seem aloof and more interested in objects than interaction with parents or others? These are usually the first signs of autism. I am not an expert, but I am speaking from experience with family members.

Sounds pretty lame to me. At 2.5, my son's key worker told me she suspected autism, but they couldn't be sure till 3. So they tested him at 3, and diagnosed then. That came from observation in the home, observation at his playschool, a selection of play tasks in a clinical session (2 people he knew in the room and a video made to show a third), and a careful assessment of our version of the story. This was free from the county children's services. They told me autism required a multidisciplinary team to diagnose.

sounds more like a screening, I would look elsewhere!

Yes, I believe it was simply a screening, although my service person led me to believe that it would be more than that. Does anyone have experience with screening results that were incorrect? Anyone have a screening that said there was "no risk", only to later on get a diagnosis on the spectrum? It seems to me something so simple couldn't possibly be adequate in deciding whether or not further evaluation is needed; I would think that it would only catch those more severely effected by their autism, and that those on the milder end would go unnoticed?
Thanks to everyone that has replied, it is very helpful.

yes, my son was never picked up on screenings, yet later on he was diagnosed Aspergers.

I would for certain look into a full eval.

good luck!

It does sound worth further investigation. If he's already getting early intervention services, you should ask about their transition process to the school district (in most states this occurs at age 3).

The test you want to have done is the ADOS (Autism Diagnostic Observation Schedule). You might see if there is a group who does these evaluations at a children's hospital. Our insurance covered it, although the provider was out of network. You can also contact local autism groups to ask who they recommend for a private evaluation. I've also heard of a parent interview called something like ADI-R.

Yes, my 5 yr old was screened just before 3yrs and there were not enough "red flags" at that age to be too concerned. he had delayed speech, but had started to talk a bit... They thought in time he'd just catch up there. He now has a lot of echolalia, which wasn't evident at 3 yrs, but is now. He made eye contact and whilst he was obviously a little "odd" at 3, lots of 2-3 yr olds do weird things. We had been watching this kid since he was a baby, he is the 4th child in our family and #1 has severe autism, so we have watched them all closely. We were unsure at 3 yrs too whether there was an ASD, or if it was just a speech delay and the tantrums and other strange behaviours that come with that age group etc.... By age 4 it was much more obvious. He was diagnosed with PDD-NOS just before 4 yrs. No imaginative play, lots of echoing, no interest in other children as playmates, meltdowns and sensory issues. These things in a 2.5 yr old are not too uncommon... They are more uncommon and obvious in a 4 yr old.
Number 5 child is 2.5 yr old. He is NT but he still struggles to communicate, spins and says the same things over and over and obsesses over doors and things, but I can just tell he's NT. I guess in the same way you feel something is up. I wouldn't worry if they can't see it yet, kids this age develop so quickly, if there is something it will very soon become more obvious.
There is so much on the net re: how you can help him now. Does he qualify for speech therapy?

I also concur that this bears more evaluation than you have gotten. You have gotten good suggestions, I do not have anything else to add to them, but I wanted to add to the chorus of encouragement.

After the results get formalized you are entitled to a reevaluation, at least that is the case in NY. I would find out what the laws are about that in your area. You can definitely fight the results of the test. Go to the IEP meeting with a video recording of your son doing the things you mentioned. It will be more than enough to have them reassess their findings. Good luck!! !

I feel a bit better in thinking that I'm justified in not being satisfied with that screening! I'm going to see if my service coordinator can arrange for the testing a poster mentioned, otherwise I will wait until August (when we have better insurance) and get it done independently. DS has made a lot of social progress lately--he is now allowing his OT to come over without having a meltdown, and even doing some activities with her. He still gets overwhelmed fairly quickly and wants to retreat to another room, but it is miles ahead of where we were just a few weeks ago. I've gotten into the routine of looking at everything through an "autism lens," so the smallest things are either convincing me that he is or isn't autistic, it's driving me nuts!
Thanks again for all the replies.

My youngest is DX'd HFA and my eldest is shortly due her ASC assessment, I know she has AS.

Both of them passed all their baby milestones, they both made eye contact with me, and were capable of pretend play. My youngest had speech regression at a very young age and despite seeing a speech therapist no flag was raised to look out for autism. She is currently home-educated but did attend school for eight months, during which despite her teacher telling me she was withdrawn, didn't interact and didn't speak up when she needed help, did not raise any suggestion she be evaluated for anything.

My eldest child, who was the first one in our family I suspected had AS, is now almost 12, when she was 8 I asked the ed psych to assess her for AS in school. They got the SENCO to observe her in a couple of lessons and told me they didn't see any signs of Asperger's. Stupidly, I trusted them. I knew a lot less about AS then and a lot less about what an assessment actually was (I thought that was it!) Now, almost 4 years on, she is having to get assessed, because she clearly has it.

My children missed out on years of possible helpful interventions because people that should have picked things up didn't. They also have been victim to the fact that females with AS do not present exactly the same as males and professionals are still living with outdated views. Professionals generally (teachers, speech therapists etc.) should have more autism awareness.