Evaluation for ASD

[avivaelona]

I don't even know where to begin. I've got a 4.5 year old son who was evaluated when he was 2.5 and found to have sensory processing issues. He "graduated" from the early intervention program and was said not to need further intervention. Fast forward a year and he started pre-school. After a parent teacher conference where the teacher clearly felt something was wrong we initiated evaluation by the school. They had their "inside" team evaluate and again they said that he had sensory processing issues, they felt he did not meet special-ed qualifications at that time but offered intervention and classroom adaptations under an ISP.

He acheived a lot of success with the extra help and since he was getting three half hour interventions a week when he was only in school four days a week for 2.5 hours a day it seemed like quite a lot and I was not unhappy with it. The psychologist at the school told me "well he meets most of the DSVM qualifications for Aspergers but its a little early to diagnose that.".

This summer though I realized that without a diagnoses he got no services at all over the summer and his behavior at home has worsened significantly. School is starting again and we have decided we really want to pursue further evalutation for a number of reasons.

Here is where I need help, we've been trying for the past two weeks to line up a doctor to see him. Our pediatrician was happy to refer him and really wants us to see a multi-disciplinary team because he has suddenly presented with some vision problems and she is concerned about sleep issues that we mentioned and worried about the possibility of undiagnosed seizures. The one she recommended does not take our insurance though and when we contacted her about another recommendation she refferred us to a place that supposedly has a long long waiting list.

I am so overwhelmed that I'm crying myself to sleep every night. Organizational skills are not my strong point and the circular run around we are getting has my head spinning. I just don't seem to understand how to do this and what each step should be. Should we be pushing the school to do further evalution? It isn't clear to me what that evaluation should be? Or do we need to get in with a developmental team through our medical insurance because the school won't test for things that aren't strictly educational?

I need a step by step really clear guide on how to proceed and it seems like everyone has conflicting advice. I have a brother with Aspergers and I would bet my right arm that my son has it too, but I don't know how to pin that down, what services would it help him get if he did have the diagnoses, and how to get someone to see him and give it to him.

[christinelin]

: It is so hard when even figuring out what help your child needs is hard.

Here are a couple of thoughts:

- Is there any local to you organization or yahoo group for parents with special needs kids? Someone there may be able to give you information on who might be covered by your insurance? I might start by googling special needs kids and your closest city.

- Is paying out of pocket an option? In our area, sadly, some of the best people don't take insurance.

- Have you had an official evaluation done by the school? They have to do one at your request. My only caveat would be that their interests and your interests are not aligned. At least in California (is this true everywhere?) they also won't give a medical diagnosis of autism (based on the DSM criteria). They may find him eligible under autism for special ed services, but one can also have an autism spectrum disorder and not qualify for an IEP (that is the case with my son).

I hope others will jump in with more thoughts.


Oh...and what services would you need if he does have AS? Some possibilities: occupational therapy to address sensory and motor delays; social skills groups to work on play and pragmatic skills; speech therapy to work on pragmatic language skills. What do you see as his deficits?

We started with OT and a social skills group and RDI, which is a relationship based, parent-led intervention. I might also google floortime for some easy ideas of things you can do at home right now.

[MommyKelly]

I would keep pushing to go through your ped. I school eval cannot dx ASD. In my state it can only be done by a child Psychologist or a Developmental Ped.

Keep calling, every day, every number you have. Wait lists? Get on them! All of them.

I have 4 kiddos with ASD, I have played this "game" a long time. I know how hard it is, but so worth it in the long run. All my kids have full services now, and have been able to grow leaps and bounds.

We also found out in our state with an Aspergers DX you get pretty much nothing for services. But when you have one for autism, the doors all open.

[kme]

It can be so frustrating and it is disturbing that it is so difficult to get help for mild ASD and related disorders. We have been everywhere with my son. One thing I have learned is the school is not always very helpful. It will help if you have a medical dx from a private practitioner but as someone else mentioned, even that does not guarantee services.
I would find a developmental pediatrician, neuropsychologist, or psychologist that SPECIALIZES IN ASD, SEES IT EVERY DAY, AND KNOWS IT WHEN THEY SEE IT. We have had every dx under the sun.
Unfortunately, as previously posted, many of the best practitioners do not take insurance. I gave up my 40th birthday trip to see one of the best earlier this year. If you cannot swing a privately paid eval, get on as many waiting lists as you can with good doctors and you never know, someone may cancel and you could get in earlier.
ASK if the doctor sees a lot of ASD patients or what their specialty is. I am convinced those who do not see it on a regular basis are very likely to misdiagnose.
Good luck!!

[Aridel]

The wait is so frustrating, but unfortunately wait lists are common. I would continue to pursue the team assessment through insurance.

If there seizure concerns, you need to see a pediatric neurologist - the team assessing for ASD may not be able to assess for seizures, only refer out. I would suggest getting this referral and making the appointment now, since there are wait lists for these specialists as well.

[leafwood]

the pps have great advice. i would also try to find a clinical psychologist who is trained in administering the ADOS which is a wonderful diagnostic tool for spectrum issues and can also be used to track progress in the future.

[Fay]

A medical diagnosis is not the same as a school's evaluation for eligibility for services. However, a medical diagnosis can sometimes be the spur that gets the ball rolling on school services. I suggest that you find a developmental psychologist or developmental pediatrician in your insurance network, then ask your regular ped to write a referral for that specialist.

[avivaelona]

I wanted to update this, haven't been around in a while, but I want to thank everyone who weighed in. Shortly after this we were able to see a neurologist at Boston Children's who diagnosed him with PDD-NOS (probable Aspergers but she felt he was too young to pin it down) He now has an IEP, and will get services over the summer this year though we are still struggling a bit to put them into place, they are assured. I'm still overwhelmed but starting to make more sense of it slowly.

[christinelin]

Welcome back and thanks for the update on the evaluation. How are you feeling about it? I found it really hard at first, but I am now so grateful for the information because it is allowing us to help my DS. Thinking of you.

[avivaelona]

Thanks for asking. Mostly I feel angry a lot actually and I'm not even sure why. I don't like to see him have to struggle so much and I wish he didn't have to. We are having a little trouble getting the summer services slotted into place and it's frustrating to have to fight for a place for him. The school has been great though and I hope that with the extra help he gets he'll be able to thrive. It's weird to me that I'm singing the praises of public school, but in this case it really has been the best choice, I only wish they were open year round.

[christinelin]

I think anger is really normal at this stage. I definitely remember feeling furious at the imperfect reactions people had to my DS's diagnosis, the fact that no one seemed to "get" my grief, the difficulty of seeing him struggle, and the readjustment of my dreams. I have move through that, but I think it is a place most of us spend some time.

I hope you get stuff in place for him. Once services are stabilized, I think it gets easier.