Autism and Medical Tests

I am a scientist, and I like data.  My attitude towards medical testing has generally been “tests, please!” as long as my insurance is paying for it, anyway.  I want as much information as possible, especially when it comes to my health.

I had an experience yesterday that made me question if this is the best approach.  When my daughter was diagnosed with Autism Spectrum Disorder, we were offered an array of of testing, including an EEG, a brain MRI, and blood tests.  The doc said we could get it all done in a few hours at the hospital, and the kiddo would be sedated through the whole thing.  Our insurance would cover it 100%.  So of course we said yes, because we wanted as much info as possible about what’s going on with out daughter.

Yesterday was our scheduled day of testing at the hospital, and it was traumatic to say the least.  First, she wasn’t allowed to eat or drink for many hours beforehand, which made me anxious because her growth has been poor so I hated not feeding her.  She didn’t seem to mind too much though.  When we got to the hospital, the first thing they tried to do was measure her blood pressure with an ankle cuff, and put a pulse and blood oxygen monitor on her fingers or toes.  All of this made her scream and thrash because she has severe sensory issues with people (especially strangers) touching her hands and feet.  In the end there was a lot of trauma all around and the nurses gave up without getting any of the measurements.

Then it was time for the sedation.  First we did a nasal spray that was quick and easy, and within 10 minutes she was asleep!  Victory!  …… Until the nurses tried to put the monitor on her foot and the EEG cap on her head.  Then we found out just how awake she could be despite the drug.  So they had to go to an IV sedative.  Having the IV placed was terrible.  Just completely awful.  It was a solid 10 minutes of screaming and struggling, and even after the sedative took effect, she was still sobbing lightly in her sleep state.

The EEG and MRI were normal.  Usually, this would be a cause for celebration and relief, but instead I feel like I put my daughter through a lot of trauma unnecessarily.  The good news is that according to the doctor, the sedative she was given means she shouldn’t remember the experience.  So perhaps it’s only me that is traumatized, but it still has me rethinking the idea of medical testing.  Unfortunately we just found out that her blood work shows anemia that is not iron deficiency caused, and so they will have to take more blood and do more tests.  More medical trauma to come.

The long road to getting help for Autism

The road to getting autism therapy for my daughter has been a long one, and it’s not quite over yet.  It started with trying to get a diagnosis.  The first time I took her to an autism diagnostic clinic, I first had to get an appointment with her pediatrician, convince him of my concerns, get a referral, and wait for an appointment.  Oh, and we had to agree to all give blood for genetic testing and enroll in a clinical trial in order to get the autism assessment.  After administering the ADOS-toddler module and a few other interviews and tests, this first clinic said our daughter did NOT have autism but rather had a global developmental delay for other, unknown reasons.

A few months later, we moved to a new state.  I wanted to get our daughter assessed again because new behaviors had appeared, and also to clarify what her diagnosis is and what might help, and to qualify for services.  This involved, again, getting a referral to the diagnostic clinic, filling out reams of paperwork, waiting for an appointment, and then actually going in for another 4.5 hour assessment.  That process took about 2 months, and we were told we were lucky it was that fast!  This time she was diagnosed with ASD, and the diagnostic team said it was a relatively clear-cut case and didn’t understand why the previous testing came back with the result it did.  It was another month before we got the full diagnostic report and had more to go on than just a diagnosis of ASD.  Total time from initial concerns to official diagnosis: 5 months.  And that’s because I worked pretty hard at making it happen.

In the meantime we were jumping through more hoops, including lots more paperwork, handing over our tax return, and another assessment to qualify for the state early intervention program.  Because the waitlists at the private autism clinic are very long, and because they only do in-clinic services (as opposed to in-home or in-school) we have decided to obtain services through the early intervention program.  After our initial entry process they began sending a speech therapist to our home 1 hour/week.  The therapist is great, and impressively, has been able to make noticeable progress with our daughter in only 1 hour/week.  But she clearly needs a lot more help.

The only autism-specific service provided by either the state program or the private clinic is ABA (applied behavior analysis) therapy.  I know this type of therapy is controversial, because some people think it’s trying to force people with autism to fake being people without autism.  There is definitely merit to that criticism, and ABA does look a little bit like training a dog (giving rewards for producing the desired behaviors).  But ABA is also the most well-studied autism therapy, with the most research showing that it makes a real, measurable difference in the life skills of those with autism.  ABA makes the biggest difference when you start before age 3 (our kiddo is about to turn 2) and can help with social skills, communication skills, and sensory issues.  To qualify to receive in-home and in-school ABA therapy sessions, our daughter had to complete yet another assessment.  We also had to have an officially scheduled meeting with the BCBA (lead ABA therapist) and our early intervention coordinator.  We are now officially green-lighted for 15 hours/week of therapy, but we’re still waiting to be put on the schedule and actually get started.  That will probably take another 2-3 weeks.  Total time between concerns and actually getting this therapy: about 9-10 months.  That’s a lot of time to lose when we’re talking about early intervention and the brains of developing children.

All of this shows how important it is for parents with developmental concerns about their children to seek help, advocate hard for their children, and get second opinions when something doesn’t seem right.  I’ve probably sunk at least 200 hours into getting this diagnosis and treatment services for her, as well as learning about her condition.  My husband and I are also doing a weekly “parent training” program to learn the ABA techniques ourselves.