Rx Autism and Lessons Learned: And how this relates to a Small Faces song

by Carol of A Different Nest

“I wish that I knew what I know now
When I was younger
I wish that I knew what I know now
When I was stronger.”

Ooh La La by the Small Faces

This week, my friend’s grandson received a formal, medical diagnosis of autism. This news brought a flood of memories of me as a confused, terrified and angry mother of another three-year old boy with autism.

What can I say? How can I help? One way is to send an e-mail with some suggestions of school services to push for, and contact information for local support groups and resources. Done, and done easily. More hard is to try to share with this boy’s family the real lessons I have learned in the past seven years. But here are a few things I know now that I wish I knew then:

EARLY INTERVENTION IS KEY BUT NOT THE ONLY THING: Focus on early intervention but don’t freak about about it and buy into the idea that there is a finite “window” for effective intervention. Yes, the earlier the better but our kids’ brains and nervous systems keep going and growing. They don’t stagnate at, say, age five. That said, if you have the resources, pour them into one-on-one therapy NOW.

FOCUS YOUR RESOURCES AND ENERGY CAREFULLY: Understand and accept that there are not enough resources – time, money, family support – to pursue every intervention and approach. If you are a millionaire or living at the poverty line, this still applies. Given limited energy resources, focus on therapies, interventions, strategies that:

- Have research and medical data to back up claims of effectiveness
- Have been around for a little while and have proven effectiveness,
- Are doable without driving you, your child and those around you totally crazy
- DO NO HARM to your child’s physical health

Here are more suggestions gleamed from my years in the autism trenches:

DO do your best to tap any and all early intervention programs in your school district and local service agencies. DO ABA, floor time or other one-on-one therapy if you can afford it but not if it causes bankruptcy or divorce. Yes, I’ve heard stories about this happening. Apply for government support and services – this in some ways is the “easy” stuff.

DO spend energy and effort figuring out communication systems, schedule tools and other ways for your child and you to communicate. Make communication, behavior management and education interventions a top priority and……

DON’T listen to every parent who tells you that a Gluten Free/Casein Free diet “rescued” their kid from autism. Raising a kid with autism is hard enough without trying to restrict your family to an expensive, difficult diet. We tried, and it was a fruitless nightmare. I am clearly biased on this one, but I encourage you to view these type of claims with healthy skepticism.

DON’T Chelate your child’s blood – this has little proven effectiveness and CAN do harm (children have died. If you don’t know what chelation therapy means, all the better.)

DO, then, read up and understand that autism treatment can be a racket that can cost families financial resources, energy, and hope. Recognize that parent stories and testimonials are not the same as scientific evidence. Check out the web site of the Association for Science in Autism Treatment before getting caught up in “biomedical” or “alternative” interventions.

DON’T spend too much time worrying about and thinking about what “caused” your child’s autism. We all think, wonder and theorize about this at first but after a while obsessing about it is counter-productive. It is what it is. And genetics plays a pretty important role, it really does.

People who claim that a certain “thing” caused YOUR child’s autism – like vaccines, heavy metals, antibiotics, or something that mom “did” while pregnant are usually the same people pushing unproven medical “treatments.” These people don’t buy into the genetics thing. I think they are wrong. And who needs more guilt??

DO understand that you are going through a type of grief that, like all grief, will not be resolved overnight. But also understand that if you can’t get beyond, or put aside, the “Why” and “Why me/my child?,” you can’t best move on to what you CAN do and what resources you CAN tap into.

DON’T forget to take care of your self and don’t get stuck on the “All Autism All the Time” channel. Yes, it’s good to read up on autism, but it’s also good to read a People magazine and see a chick flick.

DO pace yourself; you and your family are in it for the long haul so if you get to a place where things are going somewhat smoothly, go with it. Don’t create your own problems!

DON’T get caught up with other parents who think that “the school district is evil.” Sometimes, parents transfer their anger, fear and frustration about their child’s diagnosis onto their teachers and therapists. Been there, done that. Really, for the most part, they are doing their best with limited resources and I’ve found I get further being cooperative than being a bitch. And trust me. I’ve been both.

DO bring snacks to IEP meetings, and gifts for teachers and teachers assistants, even if it’s just cookies or hot cocoa mix (see the DON’T above).

These are probably all the “do’s” and “don’ts” you can absorb right now – but just one more. Look to the moms and dads who are further down the autism road than you are. Try to meet kids with autism who are older than your child, but realize there is such a broad range of functioning.

Always remember that your child and your family with grow, learn and find joy.