I have worked with various non-profit organizations (NGO’s) for most of my career. Now, as the mother of an amazing son with Autism Spectrum Disorder, I see the whole ecosystem in a different light.
There are many, many wonderful non-profit organizations doing amazing work for the community they serve. There are some great NGO’s in the autism space, yet I believe we can do better.
Autism spectrum disorder (ASD) affects more than one in 68 children (1 in 42 boy and 1 in 189 girls). Autism is considered a spectrum disorder because it affects each person differently. The severity of impact is also very widely varied between all those affected; treatment options are almost as widely diverse and possibly just as hard to decipher and choose from. Once a parent finds a treatment that fits with their parenting style, that their child responds to and gives them their best hope, they are likely to go bankrupt pursuing it as only a small number of therapies, at limited hours, well below recommended levels, are covered by insurance. Each state has different mandates, each policy different restrictions. This requires far too many families to rely on an overburdened, under-funded school system.
Under the Americans with Disabilities Act (the ADA) and Section 504 of the Rehabilitation Act (Section 504), “all elementary and secondary students with disabilities are provided an equal opportunity to participate in, and benefit from, a public education.” But providing all of the therapeutic services a child with autism needs is beyond a reasonable expectation and more than the school system is equipped or funded to handle. It simply is not sufficient.
With nowhere else to turn but their schools, it often becomes a a combative relationship with the school system. Parents demanding more and more be included in the Individual Education Plan (IEP), even if it means suing the school system to get it. This now puts the student in an adversarial position with the teachers and administrators in whose care they are in for up 35+ hours a week, for 13 or more years of their life. And in most cases they still will not receive the full spectrum of therapies and support needed to achieve their highest and best potential.
Something has to change.
Perceptions about Autism are still widely and largely antiquated and damaging. According to the CDC, 46% of children identified with ASD have average to above average intellectual ability, yet far too many are still treated as though they have a severe intellectual disability versus a communication disorder. Parents of children with a more severe form of ASD are still being told that institutionalization is their best option. We still hear comments like “she is 15, but has the mind of a 2-year-old” and “he’s 16, but mentally a toddler.”– Yet teach them to use a computer/communication device and they are revealing their vast intelligence.
Family members are still fighting the uphill battle to explain to the world that their loved one has trouble with eye-contact, speaking and interacting, but they hear everything, understand far more than people believe and behind their unique behaviors is a very intelligent, compassionate and engaged individual.
The system must improve. The conversation needs to evolve. We simply must do better.
There are many good organizations doing tremendous work on behalf of the autism community …And for cancer, MS, diabetes, kidney disease, homelessness, hunger and on and on. Yet not one of these groups would tell you they are happy with the rate of progress.
I think there has to be a way to change all of this. There must be more and better options to increase funding, impact the ecosystem and more dramatically affect change. The conversation must be more open and how we tackle these issues needs to evolve.
I haven’t figured out exactly how to do that yet, but that’s the conversation I’m most interested in having.