Mom and writer Stephanie Allen Crist is a tireless advocate for her three sons who have autism. She recently published her memoir, Discovering Autism/Discovering Neurodiversity, and I caught up with her to learn more about her children, her advocacy, and some of her beliefs about neurodiversity.
Tell me about your experience with autism and neurodiversity, and how you chose the book title.
My story is about my discovery process. It starts with my suspicion that my children were experiencing developmental delays and the initial confirmation, and then it follows through everything I had to do to reach the point of my eldest son, Willy, being diagnosed with autism. Once I'd discovered autism, there was a lot of pressure to try and "fix" my son, but I didn't see him as being "broken." By then, I'd already encountered parents and adults with autism who advocated embracing the neurological diversity (or neurodiversity) that autism represented. That alternative approach just seemed true to me.
Unfortunately, the pressure to conform only mounted as we progressed deeper into the world of autism services. This pressure began to manifest as harassment and it's this struggle that makes my story so powerful. Not only have I succeeded in raising my children (thus far) by accepting them as autistic individuals, but I faced down those who would oppress me and my children.
I chose my book title because my journey wasn't complete after I discovered autism. It was only complete once I discovered neurodiversity and after I discovered that I have the power to raise my children as they are and accept them for who they are, while still helping them develop new skills and abilities.
Please share the ages of all your children and about some of their autistic traits.
Willy (16) is the oldest. He is what you might call "high functioning" in that he talks, he socializes with his peers, he's working at grade-level in all of his classes (with special education support services), and he's likely to go to college or tech school without too much hassle.
Alex (15) is my middle son. He is what you might call "low functioning" in that he requires a communication device to talk, he mostly socializes with adults and has relatively little interest in his peers, he's not working at grade-level, he attends class in the special education wing of his school, and he's not likely to have anything resembling a typical college experience. Alex also requires more personal assistance with regards to his daily care and hygiene needs than a typically developing 15 year old.
Ben (12) is my youngest child. He falls somewhere between his brothers on the autism spectrum. He talks and can communicate most of his tangible needs, but he does not converse and he needs assistance in order to communicate less tangible needs, like where he hurts or what part of his body feels sick. Ben also attends class in the special education classroom. In his case, he's a lot closer to grade-level than Alex is, but he needs more help managing his behaviors (including aggression). He has a few friends, but socializing with unfamiliar people is a real challenge for Ben. He also requires personal assistance with regards to his grooming and daily care needs.
You assert that "raising children with autism as autistics is a valid choice that can be quite successful and affirming." What does it mean to raise children as autistic?
This is something that can be experienced in so many different ways. For us, it means that we prioritize education and services that help our children attain their own unique potential. This is in contrast to prioritizing education and services that attempt to force our children to act "normally."
Willy is an excellent example of this. You can look at him, watch him, and interact with him. You may not realize he's autistic, because he is very able and no longer fits most peoples' assumptions about what disability looks like, but you'll know very quickly that he's not "normal." Alex, on the other hand, has disabilities that are readily apparent, but instead of trying to "fix" his disabilities, we have focused our energies on maximizing his abilities. Alex can't talk and that's not going to change any time soon, if ever. But Alex can read! Alex can write! And, with his communication device, Alex can communicate!
I firmly believe that a parent, especially a parent of a child with special needs, has a responsibility to do everything in their power to ensure their child can live his or her dreams. Part of that is not listening to all the people who will say they can't, because a lot of people will say that. They'll keep saying it. But that doesn't make it true. Our children don't have to settle for the place our society has prepared for them. We can work hard to ensure they live up to their potential as fully-fledged, self-empowered human beings.
What are some of the positive benefits of this choice that you've seen in your own children?
My children know they are loved. My children know they are worthwhile human beings. My children know that they are capable of living their dreams. Some people underestimate how powerful this knowledge can be. If you've ever met someone who has just given up, then you can understand what a difference this makes. My children are not being groomed for a life of being "less than" others. They are being taught to believe in their own worth and their own possibilities.
Who are some of the adults with autism that you admire/read/want people to know about?
Some of the top ones, for me, are Ari Ne'eman, John Elder Robison, and Rachel B. Cohen-Rottenberg. These are a few of the people who are public about their place on the autism spectrum and who I've had the pleasure to interact with over the years.
Do you have any advice for parents of young children with autism?
Your child is still there. Your child was the same before the diagnosis and will continue to be the same after the diagnosis. The only thing that has changed is how much information you have about your child. Mourn your expectations, but never forget that your child is still there and that your child needs you!
Second, don't be afraid to reach out to adults with autism. They can teach you much of what you need to know to help your child. Specialists and medical experts are all well and good, and they certainly have their place, but many of the autistic adults that are out there have experienced many of the same things your child has or will experience. They are a veritable fount of information! Use that to make sure your child's childhood is the best it can possibly be.
Jamie Pacton lives near Lake Michigan where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons, Liam (6) and Eliot (4). Her writing has appeared in theAutism and Asperger's Digest (2011-2013), Parents, and the book collection Monday Coffee and Other Stories of Parenting Kids with Special Needs. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter (@jamiepacton).
Photo of Stephanie Allen Crist courtesy of Stephanie Allen Crist