These days you can’t take two steps before bumping into someone who knows someone (who knows someone) with Autism. But we belong to a small niche community within the Autism world. “Non-Verbal Autism”. I’ve seen stats that show about 25% of those with Autism are Non-Verbal.
I want to take some time to try and show what it means to be Non-Verbal. To begin, there are actually variations within this sub-group. Some have zero language, absolutely nothing. Some can use an alternate communication device such as P.E.C.S., sign language or an iPad program. Some have limited language (for example, they may be an adult but have language capabilities of a child).
Wherever you land, it is hard. Being able to communicate one’s needs and desires is a top priority for all human beings. Just take a minute and imagine what it would be like to not be able to say what you want or needed? Imagine the frustration involved. Imagine you might get upset that people aren’t understanding you and that they are “ignoring” you. Imagine that you are told you have aggressive behaviors because you have been trying to communicate something and can’t get it out. Imagine you are put into therapy to remove those “behaviors” but instead of seeing the true problem and improving communication skills they work on you just figuring out how to calm yourself down. Just imagine..
This has been Z’s world. I am confident his behaviors stem from communication issues. He is considered Non-Verbal. He has maybe 15 words he will initiate. He can mimic any word given to him. He does not have full sentences unless prompted with “Say the whole thing!” or given the sentence to say. When he does say words, he often drops the beginning or end off of the word so it sounds completely different. If he wants to eat cheese he will simply get it out and leave it on the counter for you to find at some point or will yell across the room “Cheese and Crackers”. Someone who didn’t know him may not understand that means he wants to eat those. And would not understand that it has to be cheddar cheese and saltine crackers. If you deviate he will go back and ask for it again.
Bottom line, Z’s communication (as limited as it is) may be understood by family and those who work with him but the general public would not have a clue. Case in point, we’ve been working on some skills at the grocery store. He loves the hot chicken strips at the deli. He stands in front of the case, just watching the workers move around while I stand back to give him space. He whispers “chicken” to them when their backs are turned. And if they do come up and ask what he wants, he doesn’t have the capability to explain which type of chicken he wants and how many. I’ve been in many situations in the world where people will ask him “Are you hurt?” He will often repeat your last word so he will respond with “hurt” and they look at me like they have unlocked some great mystery while I roll my eyes and try to explain.
This, of course, is concerning. How will he ever be independent if he can’t communicate? Will we ever see improvement? And the crazy part is that although this is the center of his behavior issues, we have struggled with obtaining help specific to communication. Backwards, right??
Here’s just one example of what we go through trying to obtain the necessary services..
After years of asking and changing providers, we finally got insurance to cover most of Z’s speech therapy. Here’s where the fun began… In 2016, I called 15 different speech companies. Only 2 took our PPO insurance and only one was in network. Seems easy, we obviously went with that one. We get approved for 2 times a week. They start with one per week and when we push for the second session (after a couple months of things going well) the company tells us “he isn’t motivated enough for 2 sessions.” Huh?!? Obviously we didn’t work with them any longer. We ain’t got time for that..
I went on the search again and found that Rady’s Hospital offered speech therapy and even had a location in our area! I called immediately and, wow, they took our insurance! But… they needed a referral from Z’s doctor (even though one of their own psychologists had already given a referral about a year before that…). So after yet another unnecessary doctor appointment, we had our referral. Then,9 months later, yes 9…. I got a call from Rady’s all excited that they got a referral and needed to schedule an eval. Really?? It took 9 months for that?? So I took Z over to the Rady’s office. We spent 2 hours on tests that ultimately revealed a chart that showed he was severely non-verbal. Yes, I knew this. We all knew this. So the lady says, “He qualifies for 2 sessions a week.” Perfect, that’s what we wanted! Oh, but wait, it can’t be that easy… Get this…
- Rady’s would only supplement what the school was already offering. Since our school at the time was doing 2 sessions per week, we didn’t qualify…
- We might have been able to get services during the summer but there was a waiting list of possibly 6 months which would take us beyond summer which meant we wouldn’t qualify…
- They would only work on goals that were DIFFERENT than what the school was working on so Insurance would know what specific progress insurance money paid for. No words for that…
- It was only a short term program. Longest approval would have been 12 sessions which would have equaled to only 6 weeks. It takes several times to build rapport with Z so we were looking at only 3 weeks worth of therapy…
- I could re-apply after that point and they would schedule yet another Eval….
The system is broken. When I call any agency and explain Z has Autism, the first thing they push is ABA. Autism equals ABA. Autism does not equal Speech, OT, PT, Swim, etc. Sure, those may come into play based on someone pushing for it (parents or a well-meaning teacher). But it does not come in the pre-made package you get at diagnosis (if you get anything at all). Parents are left to fend for themselves and it usually involves many painful calls and personal money spent.
The hard part about Autism is not the social or cognitive aspect, it is the behaviors. In all training, seminars and ABA sessions I have attended through the years, the main focus on behaviors is to figure out the cause. There is no way to reason with someone with Autism and tell them to “calm down”. You have to figure out what is causing the behavior and address that. So if that is the case, why is the focus not on speech therapy? Why is the focus not on social skills? Why is the focus not on OT therapy? Why is the focus not on what is actually CAUSING the behaviors?
The system is failing these kids. Insurance should be contacting ME to make sure I have all the resources I need for my child. We should be flagged in all systems (health, school, church, dental, etc) so accommodations are easier to make. Instead, the burden is on the already over-stretched family. Hours are spent on phone calls with insurance companies, time is spent on doctor visits for referrals that don’t result in services, personal funds are used to compensate for this broken system with no relief in sight. Change is needed, change is required…
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Tilted Axis 