A couple of days ago, I posted this article (http://www.healthcanal.com/genetics-birth-defects/48756-autism-signs-can-be-identified-earlier-than-formerly-thought-study-suggests.html) on my Facebook wall and it has been bugging me ever since. We can identify autism early and then what? Throw a bunch of services at a 2-year-old child and hope something sticks? It seems like prioritization is necessary, but no one wants to prioritize.
If you go onto the CDC website (http://www.cdc.gov/ncbddd/autism/treatment.html), it states early intervention is important and references one article about preschool education (technically early intervention is before preschool) and another article with an educational committee’s recommendation. The committee recommendation document is over 300 pages long (http://www.nap.edu/catalog.php?record_id=10017) and the upshot is in this paragraph taken from the executive summary:
The committee recommends that educational services begin as soon as a child is suspected of having an autistic spectrum disorder. Those services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, and developmentally appropriate educational activity toward identified objectives. What constitutes these hours, however, will vary according to a child’s chronological age, developmental level, specific strengths and weaknesses, and family needs.
So, do a bunch of therapy, throw the kitchen sink at a kid as young as possible, but we don’t really know which kids will respond and how well they will respond and what therapy is appropriate? And then there is line in the report:
Personnel preparation remains one of the weakest elements of effective programming for children with autistic spectrum disorders and their families.
Great, so throw a bunch of therapy at kids as young as possible, but chances are a good portion of your team will not be appropriately trained. It is enough to make a new autism parent want to cry.
My daughter Beth, who is now almost 6, was about 2.75 when she was diagnosed, and she had some OT (Occupational Therapy) and psychological support from 2.75 to 3, then started intensive therapy (ABA[Applied Behavioral Analysis], speech therapy, OT, and PT [Physical Therapy]) at age 3. Things did not go well in her early intervention and preschool program, so it is really hard to imagine that starting intensive therapy at age 2 with the same program would have made a world of difference. I will admit that from 2-2.5 she was still rather calm and had fewer stims and preoccupations. Maybe that is why it is best to start early, because you can teach more in that period and there will be a strong foundation for further work. Given that consideration and what I know now about my child’s challenges, I would say that the following services at home would have been most helpful to Beth from age 2-3: 1. Play therapy like Floortime or a parent-oriented behavioral approach like the Denver Model, 2. A focus on body movement and motor planning, with an OT very knowledgable in treatment for dyspraxia, and 3. Language work (receptive and verbal) with a speech therapist using a Floortime approach. But that is looking back and that is just what I think is right for my kid and our family. I have no idea what I would suggest to another parent who has a newly diagnosed 2-year-old child with autism.
It would be great to have recommendations from an Autism Therapy Prioritization Committee* specifically geared towards 2-3 year olds, where they describe particular profiles of kids at that age who have autism and what therapies would most likely help. It would also be helpful if a prioritization committee would bite the bullet and chose which ABA programs and which developmental charts are best for 2-3 year olds diagnosed with autism. In addition, it would help to know which play-based models and certifications are recommended, so that parents can ask about those certifications when they are choosing therapists (many speech, OT, and ABA therapist hold these additional certifications). I doubt we will see this type of advice any time soon. And in the meantime, parents with young children who have been diagnosed with autism have the overwhelming task of deciding what therapies to do and which therapists to hire (or fight for through the school system). My heart aches for these parents and I believe the experts have a responsibility to prioritize and further clarify early intervention recommendations.
*My name for my imaginary committee