The month of April is Autism Acceptance Month.
It used to be called Autism Awareness month. However, that was recently changed. Anyone that has felt the effects of Autism knows there is a huge difference between awareness and acceptance. While many can be aware that Autism exists, that doesn’t mean they accept that it’s a spectrum. They may not accept that their child has it. They may not accept that accommodations should be made. They may not accept that Autism is truly a medical diagnosis and nothing more than a behavioral issue that a good amount of discipline can cure.
You can find A LOT of information on all the things autism IS. You may think you know because you’ve read a book, seen a show, or watched a movie that had an autistic character in it. But rather than get into more of what Autism is, I’d rather bring not only awareness but acceptance to a few things autism is NOT.
Understanding Autism
Autism is not a one-size-fits-all diagnosis
There’s a quote that says, “If you know one person with Autism, then you know one person with autism.”
The “Spectrum” is truly that – a spectrum. It ranges from severe to mild. One child may be non-verbal with mental delays, and the other could speak without issue and have supreme intelligence. There is no one way to look at Autism Spectrum Disorder.
Eye contact means nothing
When you google “symptoms of ASD” you will easily find “little to no eye contact” as one of the symptoms. While that is true for many on the spectrum, it’s not a given. Some do not struggle with this at all. Some do a great deal. Don’t look for one symptom and think that indicates whether or not someone is autistic.
Negative behaviors are not behavioral
Sure, an autistic child is still a child. And some behaviors are simply because of that. However, the majority of the time, negative behaviors are directly related to the sensory nervous system. Sensory processing disorder (SPD) is one of the biggest hurdles for an autistic individual. Over-stimulation or under-stimulation is not processed appropriately. And if it’s not processed appropriately going in, it surely won’t manifest itself appropriately coming out.
SPD can be debilitating for an autistic individual. If you’re a parent, teacher, or therapist, becoming knowledgeable in SPD is huge. If a child is acting out and is not responding to disciplinary measures, you can bet they are trying to communicate what they need. Research. Find out what makes that child tick. Look for a trigger that happens BEFORE the behavior occurs.
“This child did not need to “change his behaviors.” We needed to understand his behaviors and what they suggested as the probable underlying reason for the behaviors. We needed to remember that behaviors are a message, a symptom—not a diagnosis.”
-Carol Kranowitz, The Out of Sync Child
Don’t assume a parent is doing nothing
If you know a child is struggling and probably needs evaluating, it doesn’t mean the parent is doing nothing. Keep in mind it can take YEARS to get a diagnosis. The waitlists for proper evaluations and then proper therapies can range anywhere from six months and beyond. If you were to get in for a medical evaluation within a year, you’d be considered extremely fortunate.
Not every child with ASD is a savant at something
When you learn someone you know has a child on the spectrum, avoid questions like: “Oh, is he/she really good at something?”
Yeah, they’re really good at being my precious child, just like yours. You may see an individual with ASD excel at something. Much of the time if you research, that’s because that portion of their brain is compensating for something else. And always think about how you would feel if someone asked that about your neurotypical child. It doesn’t matter. They’re a child. And behind every single child regardless of a diagnosis is a parent just trying to get through the day.
You can’t “see” Autism
If you find out a child, or even an adult, is on the spectrum, please don’t say, “You’d never know!” While that’s meant as a compliment, I can assure you it is not.
First of all, what if you were able to tell just by looking at them? Would that change your opinion of them? Would that make you less comfortable?
Secondly, if you “can’t tell,” chances are that’s because that person and parent have worked extremely hard to get to where they are and are continuing to work hard to navigate in a world not designed for them. If you can’t tell, then just be quiet. If you learn of it, ask questions in order to learn. But above all, treat them like you would anyone else.
Autism doesn’t mean lack of feeling
Most people on the spectrum feel things far more than the neurotypical person. They have empathy, they have emotions, they have feelings. The problem lies in processing and expression.
Those with Autism feel everything x1,000, but don’t always know what to do with those heightened feelings. That has to be almost completely taught and learned. It may start with flashcards on feelings and emotions to memorize, and work up from there. If a child is nonverbal, do not assume that it’s an indication of cognitive ability. They still feel, see and hear as much as the next person. They’re learning and growing and trying to navigate and thrive.
Therapy is not as easy as it sounds….on the parent
Therapy is HARD work on a child. But it’s safe to say it’s just as hard on the parent. Physically. Emotionally, mentally and financially. Let’s break it down:
Physically: Driving to and from therapies can be exhausting. At one point, I was spending three hours a day driving my son to and from therapy. In and out, carrying him in. Waiting. Rinse and repeat.
Emotionally: Therapy is a blessing. It is. You get to see your child learn and grow. But in that same breath, it’s hard to watch. What comes so easy for most kids doesn’t for yours. What you spend your day doing is way different than most parents … even your friends. It can be isolating and depressing. If you have a friend with a child in lots of therapy, check in on them regularly. Support them and love on them in any way you can.
Mentally: Trying to keep track of therapies is exhausting. You might be going to three to five different therapies a day, in addition to school. Not only that, you are trying to navigate and learn a whole new language yourself. The mental toll this all takes on someone is unlike anything I’ve ever known. Also, the amount of paperwork and evaluations needed for your child is enough to make your head spin.
Financially: There are a lot of primary insurances that do not cover services related to Autism. And if they do, it’s minimal. Many do not cover services without a medical diagnosis. And remember, that waitlist can take years.
National Business Group on Health and American Academy of Pediatrics reported that 50% of families affected by Autism need to reduce or stop work. So now we are down to one income. 33% of parents of a child with Autism, reported feeling the burden of financial stress. 40% higher medication costs than those not diagnosed with Autism. With insurance help, Autism Speaks reported that it costs $60,000 on average each year to adequately support someone living with ASD in the U.S.
ABA therapy (behavioral therapy), which is only approved by insurance with a medical diagnosis of Autism, is roughly $120 an hour. If your child is more on the severe end, you might be spending 40 hours a week in ABA. Without any insurance help, that’s nearly $250,000 a year, according to Autism Parenting magazine. That’s before insurance, but even with, the costs are astronomical. So, getting therapies isn’t as simple as a referral for most families.
Medicaid isn’t always an option
South Carolina is fortunate to be one of the few states that offer Tefra Medicaid. This form of Medicaid is based on needs of the child, and not income. So, for those families making “too much” to get assistance to help their child, check if your state offers this. Sadly, only 18 states do.
Not only that, getting approved for Tefra is hard. The amount of paperwork is a part-time job. And even with that, there’s a chance you get denied. But if you do get it, it is surely a blessing and can be used as a secondary insurance.
Autism does not go away
ASD is a lifelong diagnosis. The reality is, some with ASD may end up institutionalized. Some may end up graduating with honors. The latter doesn’t mean it’s easy though. There are still social, emotional, and sensory struggles to continue to work through. Forever, a person on the spectrum is navigating through life in a world not designed for them.
I leave you with these final thoughts. Be kind. Be patient. Autism does not mean less. It does not mean wrong. It does not mean weird. It does not mean anything other than different. And as we all know, different is absolutely beautiful.
