1. Can you share a bit about your child and family?
Sure! Tim and I have two kids: Molly, age 23, is neurotypical and Danny, age 21, is autistic. We also have three cats, two dogs, and a puppy, so that tells you we are a little nutty!
2. How old was Danny when he was diagnosed?
Danny was 2 1/2 when he was diagnosed with autism. Actually, a full year earlier our daycare provider suggested we get him assessed for autism. But we brushed her off. How could our sweet, snuggly little guy have autism? However, we were ignoring warning signs: language delay, TONS of stimming, lack of interest in other people, including his sister. He was content in his own little world. Thankfully, my sister confronted me and as a result we got him assessed. I still feel really guilty about this, but I was a very tired, young working mom. Once he was diagnosed, though, we dove in head first on interventions.
3. What interventions did you use and why?
This question is impossible to answer in a few sentences!
Almost right away, we believed that no single intervention would do the job. Right after diagnosis we were trained by an amazing early intervention OT in Floortime. She emphasized that therapy with a professional would never be enough and that we (the parents) needed to copy what she did pretty much all the time (which we did). From about ages 3-5, Danny did a lot of ABA which was extremely helpful for certain skills (e.g., following a simple direction) but not for others such as coping and problem-solving skills. As a result of ABA, I became a big fan of reinforcement as a teaching tool in natural (non-therapeutic) settings.
Also, Danny received wonderful early intervention services through his integrated preschool including speech and OT (the latter delivered by the amazing “Miss Kara,” owner of Galvin!). But always, always, Tim and I viewed ourselves as critical to helping Danny make progress, especially when it came to building language – not to say we became professional therapists, but that we learned from amazing professionals and copied them during “out of school and therapy time.” I also created a lot of visuals to help Danny learn tricky abstract concepts. For example, no amount of ABA would get Danny to use “she” and “he” correctly, but visual teaching did (mostly!).
As Danny got older, there was a lot of structured programming and interventions in and out of school (e.g., music therapy and social skills programming) and we continued on the homefront with our informal teaching efforts. A very critical intervention that began when Danny was 5 was monthly therapy with a clinical psychologist who specialized in helping autistic kids build coping and problem-solving skills. Her work drew from cognitive-behavioral principles and was extremely visual. This therapy was very expensive because we have crummy health insurance. But mental health is a huge priority for kiddos and I am so glad we did this.
The bottom line is that it took a ton of effort — by professionals, Tim and I, and Danny — for him to make the amazing progress that he did. Regardless of the intervention or program, it had to be delivered with a light touch and in Danny’s case, with a lot of humor!
4. What advice do you have for younger parents on choosing interventions for their autistic child?
First, I wish I could give all parents of a newly diagnosed child a big hug and tell them that while it’s not all a picnic, they will be okay. When I now attend an autism conference as the owner of MooBoo Resources (@moobooautism) I see “the look” in in young parents eyes – like a deer in the headlights trying to process all the advice and information. I know that look because I was that parent – scared and on information overload!
Next, hang in there as you will get a lot of “You must do this…[diet, nutritional supplement, therapy, etc.]” from well-meaning people. I would suggest you be careful in what advice you accept. I recommend using professionals who have a lot of experience when it comes to autism. (Galvin is an example of a really excellent agency that could help you with this.) If your child is school age, they should receive a comprehensive assessment (called an MFE) to ascertain if they are eligible for special education services and what those would be. (I could say a lot more about that but I think Miss Kara would rather I save that discussion for another day.)
But what I do suggest is make your intervention decisions based on the needs of your child. Many autistic kids have receptive and expressive language challenges and if this is the case with your child, then for sure some kind of speech therapy. Remember, maximizing communication skills (regardless of whether your child will ever speak) is a priority for all autistic kiddos!
5. April is Autism Awareness Month. There is a movement going on to shift the focus from awareness to acceptance. What are your thoughts on that?
It’s about time! Right now, autistic individuals are expected to conform to the rest of society’s norms which is extremely unfair. Let’s face it: a significant proportion of the population is on the autism spectrum…why should they be asked to do all the heavy lifting? I believe in accommodations spanning from youth into adulthood that enable autistic individuals to truly shine and have success — be it for learning, working, or anything else.
6. Is there anything else you’d like to say about your son or autism generally?
Yes! First, my now 21 year old son is awesome! He has incredible strengths and unique interests, is funny, and is a lovely human being. He is also a work-in-progress with particular challenges. But isn’t this true for all of us?
I can’t stand the tendency to view autism as this awful, terrible thing. Every single autistic person has strengths and that’s where we all should begin. Honestly, I do not know any autistic person who is lazy or unkind (being brutally honest is not the same thing as being unkind!). We certainly cannot say that’s true for neurotypicals.
Final thought: from the beginning we embraced our son for who he is – while working really hard to maximize his potential AND striving to get him accommodations he needed to learn and succeed. I really wish this would be the frame of reference for all autistic individuals.
To learn more about Danny and his family’s journey, check out mooboores.com!