Aware. And just don’t care

I’m sorry I did not do the obligatory “World Autism Day” post yesterday. Well, I’m not sorry at all for me. But I’m sure people expected it.

A couple of years ago, my friend Sara who is an adult on the autism spectrum with two sons also on the spectrum, told me she felt that Autism “Awareness” was passe. She even said,  “Everyone I know is pretty aware.” And I agreed then but now the rest of the NT world is catching on.

Awareness does not equal acceptance.

To quote Welsh autism-mom blogger Martine O’Callaghan:

Awareness is passive. How many times have you been “made aware” of a situation without being expected to do a single thing about it? “I’m just making you aware…” does not compel action or a change in behaviour. It does not, in real terms,impact the lives of Autistic people for the better.

Read her entire post. It contains a real-life example of when awareness fails miserably. Closer to home a mom I know recently confessed to me that her son was making a weird noise in a store and a woman kept giving them ugly looks. She smiled at the woman and said, “I’m sorry he has autism.” The woman scowled back and said, “I’m AWARE of what autism is,” and stormed off. Awareness, yes. Acceptance, not a freaking chance.

People have been made aware by being “blued” to death every April and by being educated by parents in the grocery store and it hasn’t accomplished almost anything. And if we want our children to be accepted, perhaps we shouldn’t take our cue from the number one autism group whose name should not be spoken. <–See what I did there? Anyhow, the “awareness” campaign is hand in hand with the ideas of  “curing” the neurodiverse and “fixing” them. While it is true that some individuals with autism just want to “be like everyone else” there are a lot more out there who embrace what makes them different and feel put down and ashamed by these “awareness” campaigns.

Don’t believe me? Well consider this:

Compare two different examples in how parents of newly diagnosed children are first introduced to autism, and how these introductions serve to stage the way parents approach their child’s neurology.

“We’re sorry to tell you that your child has autism. Tragically, there is no cure. Unfortunately, your life will never be the same. Your marriage will never be the same. Expect your marriage to fail. We are sorry that your child has been stolen, but we are happy to put you in touch with organizations that will help you to become more aware of autism statistics and scientific research. In turn, these organizations will be happy to provide you with the tools for you to raise money for them so they can continue their search for the causes and cure of autism.”

“Your child is Autistic. Their neurology allows them to uniquely perceive their environment and communications. The world has yet to catch up with neurological diversities like autism, and unfortunately this creates the challenges your child will encounter. We are happy to put you in touch with organizations who can guide you toward understanding your child by hearing from Autistic people themselves. Their firsthand knowledge of what it’s like to be a person on the spectrum, as well as professional resources advocating for the importance of accepting your child’s differences, will help ensure your child’s all around success and happiness.”

The woman who wrote those paragraphs is also a woman with autism and a mother of a child with autism. Click the link to read her entire post and how her child reacted to the idea of “awareness” and “awareness campaigns.”

And remember “awareness” doesn’t have to be positive. Google “Alex Spourdalakis death” or “Issy Stapleton, Kelli Stapleton attempted murder.” These mothers raised awareness by murdering or attempting to murder their children. Yes, there are trials, but when those difficulties and trials dominate the public discussion, it creates an atmosphere of hostility and hatred toward my child. It makes people “aware” of a life that appears to be all negative and unworthy.”

So how do we build acceptance? Well, first, do what Cammie is doing and talk about it. Talk about your love for your child and his or her positives. There is a whole world out there reflecting the first paragraph above but a lot fewer of us like myself and Cammie talking about how awesome our kids are. About how much we love them. About how a different life than we imagined is not less (thank you Temple Grandin for that idea which is still revolutionary to so many). Don’t lie and make it as if nothing bad EVER happens but celebrate those milestones. Every positive report out there is another chip in the block of lie that says, “Your child’s worth is solely dependent on whether he falls on the spectrum.”

Next, we take our kids places. We take them to the store, we take them to the movies, we take them to the beach, we take them everywhere we go. Why? Because 1 in 68 children born today will be diagnosed on the autism spectrum by age 8 and so people are going to have to get used to them sometime. Why not now? There is no guarantee your child with have a meltdown every time you go out, so give it a shot and as you get more confident, make new places familiar. And in life, meltdowns happen, to EVERYONE, so don’t let a couple get you down. Obviously work at a pace that works for you and your child but do not think autism means you have to keep your kid locked up! And if you want social interactions to become easier not only do you have to acquaint the public with your child, you have to acquaint your child with the public.

Archbishop Zygmunt Zimowski gave a public message for world autism day which included this:

We draw near to these families and this in particular is directed towards ensuring that hope is not extinguished in them, providing support so that they do not feel lost or in a state of crisis as regards their relationships at the level of emotions or as relatives. A real difficulty of integration and communication exists between the autistic person and those who enter into contact with him or her.

A question thus arises: how can this stigma be combated? A pathway of integration within the community must be followed which breaks down the isolation and the barriers that are established by these disorders and by prejudice, thereby strengthening personal relationships. This can also take place with the support of social commitment and with synergic actions in the fields of care, information, communication and formation, thereby fostering a move to true understanding and acceptance of this illness which never denies or undermines the dignity with which every person is clothed.

In this way the bases can be established for a hope that isolates neither people with autism nor their families but which, instead, is rooted in and nurtured by cooperation and reciprocal trust, following an ethic of solidarity which we should all rediscover and nourish.

Our lives were not meant to be lived in a vacuum, autism or not. And read that article to see what the Vatican is doing to help those with autism and their families become less isolated.

And we need to listen to adults on the autism spectrum. Their voices must be heard in our lives and in public policy. The autism organization whose name is not to be spoken does not have a single autistic voice on their board. And their fear tactics are notoriously upsetting to adults on the spectrum who feel their very humanity is being attacked. Because it is.

A friend in Australia on the spectrum who also has children on the spectrum introduced me to the new color of acceptance. Gold. Why gold? Well, on the periodic table of elements, the symbol for gold is Au. “Au” is the symbol many of us see on medical and school paperwork pertaining to our child. Our kids lives matter. They are worth their weight in gold and then some. They should be celebrated. A world with no Temple Grandin or Isaiah Paskowitz or Dan Akyroid is not a world I want to live in. I’m not going to lock my daughter up. She has a light that deserves to shine and I would be robbing the world of untold riches if I didn’t let that light shine for ALL to see.

Am I saying it’s wrong to “light it up blue”  or wear blue? No. But I do know those things are not as effective in accomplishing what we may like. Many people are aware and don’t care. We need to bridge that gap. We need to start teaching acceptance. We need to make sure everyone who meets us and our children know those children, they have worth. They deserve the best.

 

Advertisements