Edited by AbbyGrant - 6/23/12 at 10:35am
We used the two-pronged approach of going through both EI/school district and the Developmental Ped at the local Children's Hospital. The Dev Ped headed up the team of specialists who were part of the evaluations. The diagnostic process through Children's Hospital took about 5 months.
In my view, one of the advantages of going through the Dev Ped is the ability to rule out medical conditions that can mimic Autism Spectrum Disorders. Our Dev Ped explained that ASD should be a diagnosis of last resort; it's what is left when everything else has been eliminated. So she ran a complete physical and ordered stuff like blood test to check for genetic syndromes and metabolic disorders and an EEG to rule out seizure disorders. She also collected and reviewed all of the evals from the speech therapist, OT, audiologist, and psychologist. This was able to consider the complete medical and developmental history of my son when making her diagnosis. Because everything was so thorough, we were able to have confidence that that correct diagnosis was reached.
We still see both the Dev Ped and the Child Psychologist at Children's Hospital a couple of times a year, more often is things come up. The Dev Ped helps us sort through treatment options, including nutritional suppliments and medications. Currently DS is not on any medications for his autism, but we did have him on something a few years ago to help him get over some aggressive behavior. She (the Dev Ped) was able to guide us while using medication on a short-term basis to take the edge off his emotions and allow him to learn better ways of coping with frustration. The Child Psycholigist helps us develop strategies to deal with difficult behaviors, at school, at home, and in the community.
As my son has become older (he is nearly 8), it has become more important for us to have professionals who are independent of the school system. When he was young (preschool and kindy), we rarely had disagreements with school personnel about his placement or what services he needed. However, as he moves up through elementary school and as the school district finances get more lean, we find the need to fight more to make sure that DS gets the placement and services he needs. Having respected experts from Children's Hospital write reports supporting our position has gone a long way in helping us.
I hope that helps.
It definitely helps, Lolly. Thank you!
I had just thought of it as yet another evaluation with some medical testing thrown in and hadn't thought about it establishing a relationship with professionals outside of the school. I can definitely see how that could be helpful. And I hadn't thought about the possibility of needing medication at some point for certain issues. All very good points. Honestly, I don't think he has any underlying medical issues, but it couldn't hurt to rule it out as long as the testing isn't too stressful. I think once we all recover from all the evaluations last year with EI and the school that I'm going to contact the autism clinic at the hospital.
I can understand wanting time to recover but clinics like those often have months long waiting lists (ds' appointment was 9 months out), so I would call them now and at least ask what the typical wait is to have the appointment.
We just saw the neuro today for our 26-month-old daughter.
It was about as stressful as a typical checkup- all they did to her was weigh her, take her height and head circ, look in her eyes, and tried (and failed) to get chest sounds. (She wasn't thrilled about that part.)
Otherwise, she played with the toys we brought (new ones she'd not seen before) and wandered around while we answered questions. I took off her socks and shoes so he could see her floppy ankles, toe walking, and toe-knuckle standing.
It took an hour, and was really no big thing. We're waiting for insurance approval to get the CMA- chromosomal microarray analysis, then see the neuro again in 3 months. Unless there's something wonky in her genetic results, she'll likely get an autism diagnosis at that time.
Really, it wasn't a big deal, and I totally suggest getting in to see someone sooner, rather than later, just because there's such a long wait to a) see the neuro, b) get insurance approval for testing, c) get test results back, and d) see the neuro again.
In terms of other medical stuff, we learned today that she has hypermobility in her joints, and low tone, which was a surprise as we'd never really thought either thing was an issue for her.
I was really very happy with the services we received through EI and the first (2) years of Kindergarten. While I'd had a referral to see a behavioral Ped at each of ds's last 2 well-child appts, I'd put it off because I didn't see the need for an official diagnosis. This year 1st grade has been super hard for ds, and so I followed up on the referral. Luckily for me it only cost a $20 copay for the appt, and we got in within a month of getting all our paperwork together and turning it in. But I have Kaiser. Your results may vary. :)
ETA we also saw the same developmental ped at 6 months old and 1 year old, and a bunch of the medical testing was done at that time but it was too early to make the Aspy dx.