Autism Awareness Month is here and for most of you, this is yet another cause in the convoluted calendar of month-long observances – Breast Cancer…World Aids Day… Food Allergy… Alzheimers. .. LGBT… Suicide Prevention… Rabies… Stuttering.
Unless a particular health concern affects you personally, I would guess this is all just noise. Sure, you may have run a 5k for Multiple Sclerosis or rounded your credit card bill up to the next dollar to contribute towards Feeding America. You bought that bright pink Swell bottle in honor of Breast Cancer Awareness month in October. Even the NFL Rocks pink cleats in October.
However, the “awareness’ has developed into opportunities for monetary, tangible donations rather than initiating or educating the public on the cause and why you should give a damn. Of course foundations need the capital to move forward with research and development, but the constant parade of these fundraisers can be daunting.
For me, autism became more than just a colorful bumper sticker, (shaped like a ribbon holding puzzle pieces) nearly 3 years ago, when my instinct (followed by a diagnosis) told me my 1 year-old son was on the spectrum. That instinct was followed by an obsessive consumption in educating myself beyond the little knowledge or should I say ‘stereotypes’ that I possessed about autism, such as the social awkwardness, lack of empathy, savant-like abilities, Rainman. When a health concern infiltrates you or a loved one, you better believe that cause becomes more than relevant.
I have to care about autism. My son’s success depends upon it.
So why should you care?
Let me drop those stats. Prevalence is 1 out of 68 people, reported by the CDC in 2016. 1 out of 42 boys. That is 3.5 million+ individuals in the US. And for the first time this year, the prevalence did NOT increase. At this frequency, you will meet and know someone affected by autism (if you don’t already).
Sesame Street thought it was so important that they welcomed a new Muppet with autism, Julia, to their cast this year. It’s kind of a big deal. Autism has become so mainstream that a character was introduced into the Big Bird and Elmo crew. Julia, I trust that you will broaden those social boundaries that are currently deemed as quirky. Arm flapping, spinning in circles, sensitivity to textures or loud sounds, repetitively opening and closing a door, asking the same question 7 times in a row and ignoring the answer. Yes, this behavior is unusual which is why autistic children have been bullied and ostracized for decades. Julia has taken on the influential role as a public figure to educate the Sesame Street audience, both children and parents, about autism. Normalizing autism is an ambitious goal and I am completely on-board, but familiarizing children to the disorder is an important first step. The ABC’s are an essential skill for our children to learn, yet so is empathy, tolerance, and embracing others with differences. If you think kids won’t “get” Julia, you are underestimating your child’s intelligence.
Autism is not curable. There is no surgery, medication, or therapy that will erase this neurological disorder. It won’t go into remission and it can’t be avoided by adhering to a specific diet, exercise regimen, or abstinence of habit.
In 2015, autism’s cost to society was expected to top around $265 billion. This number is only bound to grow.
What are you paying for? For one, educational resources. IDEA (Individuals with Disabilities Educational Act) ensures that students with disabilities are provided with a free education. Last week, the Supreme Court ruled in favor of a special education student (http://www.npr.org/sections/ed/2017/03/22/521094752/the-supreme-court-rules-in-favor-of-a-special-education-student). This decision will reflect all children that need IEP’s, as it requires a tailored program to meet the specific needs of each student. A plan may call for a simple 30 minutes of speech therapy per week or the necessity for the student to be transported to a private, specialized school for an education. The escalated cost for any of these services is dependent upon federal and state funding (aka taxpayer).
Another education topic—the inclusion classroom (special education students being integrated into a general classroom setting). This model is becoming very common in the public school systems, and while I strongly support the concept, I also believe that teachers need the appropriate training along with support (additional aides or assistants) for it to be successful for ALL students. If your child doesn’t require an IEP, the quality of their education can still be impacted by the resources (or lack of) that are available in the classroom. Simply put, the public school system is underfunded and overwhelmed. This is my PSA for you to pay attention to any legislature regarding special education. Vote for public officials who care about improving the quality of education for ALL our children, disability or not.
Other costs to consider include residential and In-home care, along with employment and medical support. Recent surveys from the National Autistic Society showed only 32% of autistic adults are employed and only half of those are working full time. That leaves over 2 million without ANY type of work, which is equivalent to the entire population of New Mexico. Recently, companies, which include Microsoft, SAP, Ernst & Young, Hewlett Packard and JP Morgan, have made an initiative to hire people on the autism spectrum claiming they are looking to create a “neurodiverse” workforce. Let’s be real—these companies are hiring the highly-functioning Aspies that have been employed in Silicon Valley for years prior. Be aware that 2 million people account for a large majority of the unemployed adults in the US, which was 7.5 million altogether in February of 2017.
President Trump has demonstrated an interest in autism. During the debates, he professed his belief that vaccinations are the cause of the autism “epidemic.” Obviously he is Team Anti-Vax, a stance which is quite dangerous for the leader of our country to pronounce to the world. That belief originates from ONE study conducted by doctor Andrew Wakefield in 1998. Trump has appointed and surrounded himself with staff who are not advocates of special education. Yes, I’m looking at you, Betsy DeVos. Although no legislation has officially been passed that will affect the autism community, I will be paying attention to every move he makes for the next 4 years. I’m wary to entrust a man who blatantly mocked a disabled reporter and have mercy on those policymakers who decide to oppose special education rights. Autism and special needs parents are resilient warriors. They won’t go down without putting in the good fight to obtain justice.
Our world is still trying to understand autism itself. Scientists continue to probe into the causes. Educators and doctors learn through trial and error the most successful treatments and interventions. Advocates and politicians decide on what policies and environments will build the framework for those on the spectrum to succeed. The experts keep persevering, and autism is our humankind. Your grocery cashier, the man who spots you at the gym, the boy on your son’s lacrosse team, the Starbuck’s barista who remembers your order of a Double Shot Skinny Latte.
Four years ago, I probably would have passed over this post. Autism was a disorder that affected other people, but not me. There was no chance my child was going to be that 1 out of 68. Now, there isn’t a day that goes by that autism doesn’t cross my mind. I’m reminded when I put my son on the bus so he can attend his PreK inclusion classroom, or when he’s frantically searching for the yellow soccer ball he has to constantly carry in his hand 24/7. I’m reminded when he refuses to eat a Goldfish because of its crunchy texture, or when I find him overly transfixed with his shadow.
My son is rambunctious, cheerful, perceptive, a nurturing brother to his siblings—truly a sweet child. I feel ashamed and appalled that I didn’t want that part of him. That autistic part.
Autism isn’t something you are trying to avoid or pity. Autism isn’t the justification you attribute towards your colleague who won’t make direct eye contact. Autism is just a piece of what comprises an individual. You know that ‘weird ‘ kid that lives in the white house with red shutters down the street? That ‘weird’ may be the uncontrollable, innate piece of him.
This month make a special effort to reach out to someone with autism. It may be the beginning of a meaningful, divine relationship for both of you.