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Being a parent of an autistic child has absolutely changed my life, but not for the reasons you might assume: my son Leo’s autism has not ruined my life or destroyed my marriage, nor has parenting an autistic child made me a nobler, better person.
What being an autism parent has done, and what Leo himself has taught me, is the necessity of appreciating, loving and respecting all kids for exactly who they are, and demanding respect and understanding from anyone who encounters them. Parenting Leo has turned me into an activist.
Focusing on Humanity and Equal Rights
Asserting that my son’s life and happiness are as important (to him!) as anyone else’s may seem like Basic Human Dignity 101. But, most parents like me don’t get the message that it’s our job to focus on the humanity and equal rights of our kids with disabilities–especially kids with multiple and significant needs. The mainstream media just can’t stop treating autistic people like Leo as special angels or damaged burdens to society and parents like me as martyrs or autism’s zombified victims. My wonderful, amazing son deserves nothing less than me confronting those messages head on, speaking up and speaking out.
Combating Negativity
It’s an uphill battle. Default negativity seeps into even traditionally impartial media outlets, as when NPR’s This American Life recently reran a 2006 story about a family’s decision to put their autistic teenage son in residential placement. While I understand that such arrangements can sometimes benefit autistic people as well as their families, the story framed autism as a siege that the family was enduring because they had no choice. There was no attempt to humanize the autistic son, to understand him or the possible reasons for his aggression. If I had been a casual listener, my takeaway would have been this: Autism is hell—a takeaway unfair to every last autistic person on this planet.
If these negativity bombs are what the even-handed mainstream media outlets use to characterize autism parenting, how are new parents supposed to view autism with anything other than abject terror? When parents of autistic children are encouraged to view themselves as resentful victims, that is a significant barrier to understanding that disability is part of natural human variation, accepting that it has become part of our lives and directing our energies into supporting our kids.
Media hit pieces on autism families also make me grumpy because Leo is such a great person. He’s sweet, mischievous, a good listener, a self-taught swimmer, a stalwart hiking companion and a spreader of joy. At this point, because of his autism, I’m supposed to write “but” and list his challenges because—again—making autism discussions about negatives rather than positives is what we’ve been conditioned to expect. That’s how many well-meaning experts and fellow parents write about autistic people: put them on display, catalog the reasons to treat them as lesser and keep the cycle of discriminatory or self-pitying attitudes going—ensure that the world keeps treating autistic people like Leo separately, differently.
I won’t have it. My son matters.
Fighting for Quality of Life
It is brutal to live in a society that both fears and does not care to understand and accommodate people like my son, that does not care to make educating about autism and disability part of everyone’s reality. And so, like the self-advocates Leo and I admire, we parents have to fight. We fight school districts that deny our children services. We fight for respite care that improves quality of life for our children as well as ourselves. We fight for alternative communication evaluations and devices. We fight.
Being an autism parent won’t always be this way. Autistic rights and disability rights are civil rights. I tell myself that eventually, our society will be forced to realize this truth. I have this faith because organizations like the Autistic Self Advocacy Network are already affecting policy, already being forces for positive change. I want other parents to be aware of and support such efforts so that they can share my faith about our children’s future.
I also take heart in the activism of other autism parents, of individual autistic advocates and of in-tune professionals who never stop urging our society to embrace Leo and other autistic people, and whose efforts will lead to that accepting world they so deserve.
I look forward to that world, in which Leo and other autistic people don’t have to explain their presence or justify even the most extensive physical, social or educational accommodations; in which people don’t question sensory needs, the utility of flapping hands or the comfort of stimming (self-stimulatory behavior) and routine. Society wouldn’t cordon off my family in a pity backwater. And I’d simply be accepted as who I already am: a happy parent, doing the best I can for my beloved kids.
Until then, I have work to do.
Disclosure: I know Shannon and Leo in real life. His mother is not exaggerating: Leo *is* a joy, and by the way, is one of the most polite children I know.
My child has Asperger’s. He’s entertaining, a true artist/cartoonist, has a memory like a sponge (he’s my “remind me to do…” person), he is friendly, polite, LOVES blonde girls and is not shy (he’s 10!), he can sing a song (in tune!) just after hearing a song. He taught himself to swim, too! He is the best, most wonderful thing that has ever happened to me. I embrace the uniqueness. When he is stimming and running up and down the hall into the living room, I KNOW that he is in a creative cycle and something is making him excited. He may come up with a story, a cartoon… I never really know! So STIM AWAY!!! I don’t care! If that is what makes his creative juices flow, who am I or anyone else to stop him?
Thank you so much for writing this. Let’s embrace their quirks! They are different. They are unique. I am truly blessed to have my child. He has shown me more about people and life than any other experience could. My world is a better place because of him. Because he teaches ME. And I will let him be who he wants to be. 🙂
MY 5 year old son is Autistic. He has brought joy to my life and family. He is funny, loving, and smart. He has taught himself how to read and you are always seeing him with a book somewhere. He loves putting on shows and being the center of attention. In fact I say Lady Gaga’s new song I Live for the applause was made for him. If he knows that something he has done has made someone laugh or clap for him you can’t get him to stop. Sure we have bad days but that’s not what I focus on. I have bad days too we all do. I’m tired of people assuming that all Autistic children are aggressive, screaming, tantrum throwing burdens on their families. I bet their kids have thrown tantrums before and acted up in public. I’m glad that someone has spoken up along with the other parents that has posted comments to say their children are wonderful and creative people not to be labelled.
I absolutely love LOVE this! LOVE!
Terrific piece, Shannon. PS the link to “the utility of flapping hands” for Unstrange Mind’s post has been removed.
I have a child with Down syndrome and taught adapted PE for 7 years. I too changed profoundly in how I view the individual person, so much so that I have developed a new biological theory of personality. Currently we have 8 psychological theories, none of them mutually agreed upon or verified. Psychology is the expert on defining personality and behavioral disorders yet it has no working definition or theory of personality. The vague definition they do use focuses on people’s behaviors. I believe each of us is the manifestation of how we are able to understand information in all its forms. Our behaviors simply reflects our understanding. Our human behaviors also serve as tools we actively and constantly use to orient, stabilize, and monitor the information from and our interactions with our environments. To diagnose a disorder based on behaviors that appear disordered from an observer’s perspective will someday seem as misguided as putting leaches on sick people. Nobody can be disordered from their perspective. Every individual has to make sense of the world in ways that make sense to his or her unique capacities and capabilities. I believe many people on the so called spectrum are being labeled for their personality types. Their personalities reflect their operating systems and all of us were meant to utilize our operating systems, not taylor them so they can appear normal to an authority who own the power to define what normal and abnormal behavior is. As long as we define people by their behaviors, there will never be equal rights.
As a parent of an autistic (as he labels himself), I am reminded every day of the importance of compassion and patience and become better every day at applying them to all the people I encounter in my life. Not perfect at it, but a lot better than I used to be.
Comment Part II: Just to clarify, my son is a fascinating character who makes the world a better place for everyone who knows him. The challenges, when they occur, seem less challenging when approached with compassion and patience, which is making me a better person. The point I was trying to make in Comment Part I.
This is so spot-on as an answer to people who say positive parents (or autistic people themselves) like you are “in denial”. Such projection. Much negativity. So frustrating. On the other hand, your view opens the heart to a whole new world of joy and discovery (this sounds so trite, but how else to describe it?) of details and aspects of our wonder-full humanness. With the negative view of autism information stops at the declaration of: “this is a tragedy”; full-stop, “don’t want to go there”, “put the kid far from your ‘normal’ life and be done with it”; whereas, getting to know your autistic child (or one’s own autism) with an open mind frees a person to explore the depths of loving someone (or yourself) and being happy to go further on. Seeking understanding, knowledge, and the wisdom in the human bond is what we should be looking for instead of fear, alarmism, and a fight to the death struggle against autism is so exhausting. Adjusting to what we find in front of us instead of trying to force a cartoonish “norm” we had in mind as a teenager can be done. If we need help breaking free of that suffocating fantasy, I think we have a very resourceful and deep autism community; and we have the internet now, we can connect so much more easily than when most of these anti-autism/pro-fear organizations started, so there is very little excuse for ignorance [besides the fear-mongering misinformation campaign that the often media-savvy leaders designed — we are winning more frequently now, though]. I’m sorry that I cannot describe these things more concretely without being succinct; I think you guys know what I mean, though.
My 6 year old is a joy as well, but we are fighting our district who refuses to even recognize his aspergers. What do we do?