Like Muslims, the Autism Community is Not a Monolith

Ali Family Autism Truths #19 – April 19, 2016

The morning started with a visit to yet another specialist today for D. The medical mysteries and questions keep a coming. Last year (2015) ended with a week-long hospital stay for D and some medical issues for which definitive answers still elude us. And this year is a continuation of the medical conundrums.

There’s a contingency of the autism community for whom the mantra is: Autism is Medical. As in, if you dig deep and try and understand the biology of an autistic child or individual and then treat whatever issues are there, things will improve.

There’s a contingency of the autism community for whom the focus is on neurodiversity, as in there shouldn’t be a push to try and change or eliminate different autistic behaviors in hopes of achieving a “normal” or neurotypical child. Rather, we should love and celebrate our differences and the uniqueness and strengths of every autistic individual.

We should respect the individual difficulties of autistic individuals while figuring out ways of communication and support that works with their different characteristics. As in, don’t try to eliminate scripting, if that is what your kid does. Work to understand the script and develop communication through it.

There’s a contingency of the autism community for whom the focus is vaccine injury and are continuously working against the vast public tide to advocate for safe vaccines, vaccine choice and vaccine education.

There’s a contingency of the autism community that struggles with issues of faith and can have misplaced notions of God’s intentions or struggle with their belief and why God chose things to happen the way He did. Who may be told to pray harder or to put their faith solely in God. For whom faith can be a blessing and at times a burden.

The autism community is vast and varied with a plethora of opinions and focus. Voices of those with autism, parent voices, caregiving voices, educator voices – and there’s something to be learned from all of it, especially the voices of those who are living autism, if they have the ability to communicate their thoughts and feelings to the world.

Which contingency are we a part of? I’m part of D’s contingency – where autism is medical, neurodiversity is appreciated and touted, faith is an important and real part of the it all, vaccines are something I’ll only discuss in private and my most important advocacy is for D and his siblings. Sometimes our days are doom and gloom, and other times our days are driven by happy and positivity.

And so, D’s day started in the doctor’s office seeing a new specialist, it grew strained and difficult in the late afternoon when D definitely was not feeling it, whatever it is – and it ended with an anxiety-free bedtime, which is more than I can hope for.

The truth is, we’ll always make mistakes and misunderstand each other – D and I and the rest of the family. We never truly get this right. But the best we can do is keep trying, keep listening, keep renewing our intentions and keep doing our best. Keep asking each other for forgiveness for our shortcomings. Keep forgiving each other. Keep learning. Keep growing. Keep challenging ourselves. Keep challenging the world,

Keep holding ourselves and the world responsible for what D needs and deserves.

Keep refusing to be pushed in a corner or marginalized.

Keep being respectful. Even when we disagree.

There’s truth in all of the contingencies. There’s conflict in all of the contingencies. That’s just how it is.

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