When I was asked to write a piece for Kate Winslet’s Golden Hat Foundation I was beside myself. When I learned it would be for April – Autism
Awareness ACCEPTANCE month – I experienced a non-verbal moment. Seriously. I recently began following @KateWinsletGHF on Twitter because I liked what I was seeing: Messages of #posAutivity and respect! When I had the opportunity to speak with someone and learn about the Foundation, its background and mission, I was genuinely moved. Oh! And did I happen to mention they have Autistic people working for the organization AND they ask input from Autistic people AND they actually listen to that input! YaY!! So, please, if you’re not yet following them, go check them out!
Being the parent of disabled children, I will have to say I unknowingly began advocating over a decade ago. At the time I didn’t realize my role was any different than what other Moms were doing for their children – i.e. I was just a Mom being a Mom - because my oldest child had invisible disabilities I had not yet discovered. About 7 years later and two more children into motherhood, my role began to evolve. It was obvious that I was no longer doing what all the other Moms were doing because my son’s disabilities were not just the invisible kind. His needs were much more than his older sister’s and more accommodations were required. A couple years later my youngest daughter’s disabilities became apparent and my different style of parenting showed for what it really was. I was in fact an…
(a person who publicly supports or recommends a particular cause or policy)
This article is not going to be a checklist of deficits and delays, but I want to share with you how I got where I am today. My oldest daughter was diagnosed with Asperger’s Syndrome, my son was diagnosed with autism and my youngest daughter was diagnosed with a visual processing disorder with the possibility that she may be on the spectrum as well. Oh! And for those of you whom I have yet to meet, I am Autistic, too.
My role as an advocate evolved even further a couple years ago when I went from a Mom advocating for her kids to an Autistic person advocating for autism acceptance. During that time I participated in the Virginia Board for People with Disabilities (VBPD) Partners in Policymaking program, and my evolution continued. I became an advocate for disability rights. And further still a few months ago when my status as an advocate changed to…
(a person who campaigns for some kind of social change)
Awareness is important, it tells us that something is out there and we need to know about it. Since April is Autism Awareness month I thought I would share with you why I have never advocated for autism awareness. The reason is this:
Knowing that autism is ‘out there’ is not enough.
If you have autism in your life, whether you are Autistic yourself or you have a child, sibling, parent, partner or friend who is Autistic, then you are aware of autism. If you are an educator, healthcare provider, professional, or aid to Autistic people, you are aware of autism. And if you watch the news, read magazines, use the internet, read books and blogs on the subject, then you are…
Aware of autism.
Lots of awareness going around these days and not nearly enough acceptance. For example, a few months ago I wrote a blog post on Stimming. I would not normally quote myself, but I was later asked to come up with a short bit for a meme sharing what autism acceptance meant to me, so I pulled this quote from my blog:
“When we can say we are a society that’s not merely aware, but that’s actually in acceptance of autism, then our behaviors will be recognized as characteristics of a person, not symptoms of a disorder.”
I was not trying to be profound I was simply offering what I considered logical information. I cannot tell you how many times that meme was tweeted, linked to, ‘Liked’ and shared on Facebook. It was as if I had discovered a real live unicorn! But to me it just made sense. I was asked my thoughts on autism acceptance, and that was the idea that came to me…
We have to stop being ‘aware’ of people being ‘disordered’ and start accepting people as they are.
While awareness is important it only tells us what to look for. Beyond that, you have to look at the type of awareness. For instance, if I make you aware of the symptoms of autism, you will look to see what is ‘wrong’ with my kids and what is ‘wrong’ with me. Not only does this type of awareness tell us to watch out, or to beware, it tells us outright to look for the deficits and delays: Consider what is ‘wrong’ with your child and how you can go about ‘fixing’ them. This type of information focuses on the Medical Model of Disability – fix, rehabilitate, prevent and cure.
The Medical Model is based on the idea that disability is a problem located solely within the person. It focuses on individual deficit and thus sees disability as something to be fixed or cured.
Supporters of the Medical Model are constantly making us aware of what is ‘wrong’ with us and what can be done to make us more like non-Autistic folks so we will blend in…
This is not ACCEPTANCE.
And why is it I have never been handed a checklist of the positives that go along with autism? Or the abilities and strengths? Are the positives not important? Of course they are. In opposition to the Medical Model the Social Model of Disability will tell you that nothing is ‘wrong’ with us.
The Social Model is based on the idea that disability is socially constructed rather than a part of the person. A distinction is made between impairment and disability with an impairment being any physical, sensory or cognitive limitation. Disability on the other hand is the way society constructs the individual as a problem based on the perceived understanding of impairment. So a person not being able to walk is only made problematic by the fact that we have built a world that is inaccessible to wheelchairs. Therefore disability is the result of the environment rather than something within the individual.
The Social Model, which is the one I adhere to, will tell you that Autistic people – all disabled people – should be accepted as we are and accommodated in any way necessary so we can be included in society right alongside our non-disabled peers…
Don’t change the person, change the environment.
Disability is a Natural Part of Life
I was born Autistic. It affects how I experience emotions, learning, thoughts, relationships and the world around me, and how I’ve experienced these things since birth. It is the natural way of being for me and it’s the same for my kids. They do not know another way of life. What proponents of the Medical Model consider missing or damaged in us are things that we’ve gotten along without or had accommodated so we could succeed.
Is it really too much to ask for accommodations so we can actively participate?
Is it too much to expect inclusion so we can be a part of the community? No, it is not too much to ask, and it’s not too much to expect. It has to be acceptance over awareness. There is no choice to be made because when you truly love someone acceptance is unconditional. You love the whole person:
• Laughter • Stimming • Smiles • Echolalia • Signing • Love • Meltdowns • Special Interests • Self-Determination • Scripting • The Giggles • Tears • Non-speaking • Sensory Overload • Shutdowns • Strengths • Weaknesses •
Most importantly, you cannot try to change us to meet the expectations of others. You cannot make us feel as though we are not valued just as we are. Unconditional means that you take the good with the bad, the easy with the hard. But let’s be honest, most of the information about autism out there does not make acceptance an easy task. It makes us feel as though acceptance is a last resort, as if it is about giving up: I couldn’t fix you. I couldn’t change you, so we’ll put up with what you are.
But that’s not acceptance either, that’s submission.
My kids are beautiful just the way they are, and being disabled is a part of that beauty. It is a part of their person. Are there challenges? Are things harder for them? In some ways, very much so, but no neurology is perfect. Everyone has to work to succeed, my kids just happen to need accommodations to do so. And from a parenting perspective raising any child, regardless of disabilities, is not easy. My focus is trained on accommodating my kids, not changing them.
When my oldest daughter’s biting stim needed to be addressed (she would bite anything she could sink her teeth into – people included) I didn’t force her to stop, I re-directed her stim. I found a cool tie-dye chew ring on a black rope necklace that allowed her to bite anytime she liked without interfering with others. And when I realized my son was non-speaking, I sought other forms of communication – picture exchange, iPad – and he was taught to use them. And he liked it! It was communication that was easier and that made sense to him. And when we realized the extent of my youngest daughter’s visual processing difficulties and sensory integration issues, we did not force therapies to make her see and experience things the way non-disabled people do. We let her acclimate to the world in her time and in her way. We chose methods of working with her visually that she liked and that made her comfortable. It was not fast by any means, but it was effective and as stress-free as possible. It all boils down to this…
My kids know that nothing is ‘wrong’ with them, but that they do need accommodations to be successful.
Autism awareness is the least we can do, and while I appreciate the sentiment, I believe it is time for much more. Moving from awareness to acceptance is a process and for many, not a simple one. It’s having the guts to stand against the majority and tell them that they are wrong. And this is where the whole unconditional love part comes in. When we love people for who they are and we truly accept them – everything about them – we find ourselves able to let go of the worry of what others may think. We disregard the opinions and judgments of a society ignorant about what autism really is…
A differing neurology.
Autism is not a disease and it is not an epidemic. It is not a health crisis and it is not an affliction that needs to be cured. It is a different way of experiencing the world, a different way of being. You cannot love me but hate my autism, just as you cannot accept me while trying to reject my autism. When you speak of autism as a thing you separate it from me as if it is possible to do so, and it is not. I do not have autism I am Autistic.
It is time to let go of the idea that awareness is something to strive for – the end goal. I would like to think of it as more of a way to get your feet wet. And honestly, I think our feet are wet enough already. It is time to wade in, dive in, whatever works best for you. And it is time to move forward! Let’s make the month of April, for starters anyway,