Advice to The Newly Diagnosed Autism Parent

Maybe it’s just me but I’m so tired of reading clinical accounts of autism How tos… You know, those books written by professionals telling you what to do with your child when they act a certain way. Id rather talk to someone in the trenches with me. Id rather read real life accounts about kids on roofs and poop smeared on walls. Its more real.

It seems that every professional book starts the same way. “What is Autism?” is usually within the first line and the topic of the first chapter. Often including a picture of the DSM criteria for diagnosis. To me, its all hogwash. And im sure that most seasoned autism parents at some point have said, “I can spot a spectrum kid from a mile away. I don’t need a doctor to tell me if a child is autistic”. That’s the part that gets a bit sketchy. Its tough as a now seasoned autism parent when you meet someone for a playdate and notice all the tell tale signs in their kid but you don’t have the heart to say anything and so you sit silently waiting for the news to come out. I have had to play this waiting game about three times so far and when the parent comes to me after a tough pediatrician visit or their first evaluation with fear in their voice I already know what they are going to say. I already know the struggles they will face and that is not something a “professional” can prepare you for.

A friend of mines son was just diagnosed with autism about two weeks ago and she is beginning the first phase of the process of obtaining services.  She had posted on her facebook this afternoon that she can’t seem to get in to get a formal evaluation until at least February (6 months from now) Another person commented saying, “can’t you complain to the doctor and get things pushed through?” I read this and shook my head knowing that the whole autism world is very different than most other medicalized worlds out there. I took a deep breath and began typing on my phone, “Unfortunately, that will make no difference in this case and won’t help. There are wait lists everywhere you turn and really 6 months isn’t that bad. Everyone is waiting (even us. we are currently number 223 for physical therapy and number 111 for occupational therapy which comes to about, at best, 5 months wait). It took us 5 years to get ABA. However there are things you can do in the mean time… Call me.”

It’s scary at the beginning. You now have this name for what you knew was a bit odd and you have a “treatment plan” and all the professionals are telling you “early intervention is key” but at the same time all the clinicians are saying, “you have to wait” and all the while you are waiting you are watching your child fall farther and farther behind as your desperation grows. Its like a slow torture. Its the idea of knowing there is help out there and you just can’t seem to obtain it and at times you feel like a failure even though you have done all the research, made all the phone calls, did all the begging and have the filled up notebooks full of phone numbers and obscure notes and scribbles to prove it. You flip through your notebooks as if you have missed something somewhere only to find you aren’t missing anything, in fact what you are finding is a brick wall and no way to climb it.

Fast foward a year and your services are up and running but you find that the occupational therapist is brand new and doesn’t have any answers, the speech therapist, after 12 sessions, just continues blowing bubbles and saying “Pop!” while staring at this unresponsive three year old (no joke this is a real life example experienced by me)  still waiting for him to respond. You realize that the therapies you had waited for for so long are less than par and so your search begins with yet another wait list. Only this time, you have some more insight into what speech should be and you take a more concerted effort into your research of clinicians. After a while, you learn to leave when therapy gets, for lack of better terms, “stupid”. You realize the stagnation much sooner and you make the move… But not before consulting the other autism parents you have met through your prior therapies and programs. Its these “waiting room friends” that eventually become your network. (Word of advice, don’t ever just sit in a waiting room. talk to each other and ask questions I get some of the greatest references for therapies in those waiting rooms).

Which brings me to my next point, ABA. AHHHHHH ABA. Applied behavioral analysis… that one therapy that everyone says is the golden ticket. I bought into this school of thought. I remember laying in bed night after night as I waited for services thinking, “If he could just get ABA he would get better. He could be the next “I used to be autistic but now I’m an engineer” story! Well, I’m ganna be honest here, Aba did teach him some great things but it has not even come close to my expectations. Sure, because of ABA he has a bit more speech. but we are three years in and we have to script everything. For instance, his birthday is next week. so guess what? that question and answer we taught him has to be retrained. you know… “Aiden how old are you?” “nine.” that exchange will take about a month to fix. So please please please don’t ever think that ABA will “make it all better” it can only help with the basics the rest has to come from experience. And those of us working with the more severe end of the spectrum there will be a day when you realize that a tech cancelling a session is no longer a reason to get angry because you will come to see therapy through a different lense. As i said to our tech today when she apologized for cancelling another session “eh I’m not mad you are cancelling autism is what it is and one cancelled ABA session isn’t going to change that.” The therapist looked at me perplexed but i didn’t elaborate further. And those of you with little ones just starting out I’m not trying to deter you in your hopes. Keep hoping but remember to keep your feet on the ground as well.

Lastly, Stay away from clinical books. and for goodness sake please stop it with the How to lists. you know the ones, “how to potty train your autistic child” “How to teach your child with autism _______” “10 steps to back to school success” blah blah blah. Every kid is different. and most of those “theories” don’t work except in the highest of functioning autistic individuals. Wanna know what to do? Ask the parent of an autistic child older than yours. Trust me, they have tried it all. They have felt it all. They have done it all and let me tell you, the way that they are going to tell you with often be so off the wall you will look at them with that “are you kidding me” look in your eye and we will smile back at you and say, “nope not kidding just try it”.  take a deep breath and Godspeed my fellow autism warriors.

 

2 thoughts on “Advice to The Newly Diagnosed Autism Parent

    1. thank you so much for the note. its so nice to hear this. Sometimes I think i share a bit too much but then if no one talks about it then how can we really get any traction.

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