“If at any time you see darkness, or feel that you are lost, look harder. Look harder and wider and with different eyes, and find the joy in your life. Find the joy in your child. Find the love and remember the journey. Remember that this is not the station. Autism is something that you have to learn to understand with time; it is a journey for you as a parent, a learning journey. Trust the journey.”
Ally Grace, an autistic woman and a mother with four autistic children, is one of the voices offering hope, wisdom, personal experience, and unique insight in The Real Experts: Readings for Parents of Autistic Children. Autonomous Press’ latest release is a wonderful resource; it is ingenious in that unlike many other books on the market attempting to offer wisdom and advice to parents of autistic children, the contributors in the collection are autistic adults. Because of this, these writers are unique position of being experts on autism simply by having grown up as autistic children.
The 128-page collection was edited by writer and activist Michelle Sutton, who is herself a parent of autistic children, and features essays by a wide range of autistic voices: activists, writers, poets, students, and teachers. We hear from autistic adults who are now parents themselves of autistic children, such as Elizabeth J. (ibby) Grace and Briannon Lee. Autistic adults who survived dysfunctional families and abuse, such as Kassiane Sibley and Michael Scott Monje, Jr., share their own experiences. And many of the adults in the collection share insights on language and communication, such as Morénike Giwa Onaiwu and Amy Sequenzia. These adults reach out to parents of autistic children by sharing their observations as the adults they are now, as well as their experiences as the children that they were.
Nick Walker’s essays begin the collection with both an excellent explanation of what autism is and a vivid, sensory-filled picture from his own experiences as he moves through one particular day while interacting with his environment, friends, loved ones, and his students. For example, in the second essay “This Is Autism” he shares a sensory-filled moment while in his aikido dojo:
“Dojo, walls, blue mat on blonde wood floor. Seven of my aikido students in white gi, early arrivals for class, on the mat, stretching. The choir is still singing blue-white, the walls still have that minty tingle. Interpreting some of the currents and eddies of the river as discrete objects with names doesn’t make the river stop. The flow is always happening. The world of discrete objects and names is a part of the river, too, and it’s the part where most other people live by default. Me, I’m just visiting.”
The contributors who follow tackle a wide range of very relevant topics facing autistic children and their parents today. For example, Paige Ballou urges parents not to withhold from their children the fact that they are autistic in a very lucid and conversational tone in her essay, “You Should Tell Your Kids that They’re Autistic”. She shares her observations that the lack of a word to help a child put a name to what is different about them will not help the child, and that the experiences of autistic children who know the term and those that do not are still identical:
“Not knowing the word ‘autistic’ will not make your child not autistic, and it will not protect them from the mistreatment that frequently follows being autistic. I carried no label of a disability for most of my life, yet most of the same things happened to me as to people who did.”
Included in the collection is Sparrow Rose Jones’ insightful and excellent essay about Applied Behavioral Analysis (ABA). She reaches out to parents with the understanding that they wish to do the best for their children and offers some observations and guidelines to help navigate and select the best therapies for their children, while debunking the idea that “treating” autistic children should have an end result of making them indistinguishable from non-autistic children:
“In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation.”
Many of the contributors speak from places of personal pain. Particularly riveting is Kassiane Sibley’s essay, “The Cost of Indistinguishability is Unreasonable.” She speaks of what the repeated message that she needed to be “normal” – not apparently autistic and indistinguishable from her peers – cost her. For example, she speaks the lack of boundaries and unequal power balance evident in this negative message here:
“She was taught that friends works by when people want you to do things, she had do them for them. And then they will be your friend. But she doesn’t get to ask things of them, they are tolerating her and that is their end of the deal. She is weird and loathsome and deserves every bad thing that ever could.”
Communication, being frequently discussed in relation to autistic children, is also addressed by the contributors. Many of them rely part or all of the time on written or typed communication. In light of the expansion and popularity of social media, Morénike Giwa Onaiwu answers the criticism that social media is an inferior or “fake” method of social connection and communication in her essay, “Why I Don’t Like All of Those ‘Get Off Social Media and Into the Real World’ Posts”:
“I socialize more easily this way because I am autistic, I am busy, I am a mom with a large family of which many members have disabilities and require extensive time and support, and socializing online is less stress-inducing. Some people socialize better online because they have geographic constraints, because of physical/mental/emotional disability, and/or for other reasons.
We respect people’s right to small talk, to being around people all the time, and to socializing the way that works best for them. Please respect the right of people like me to socialize the way that works best for us.”
Autonomous Press continues to present groundbreaking books as part of its mission to help build disability and neurodivergent literature and studies. It is very exciting to watch new material emerge from this independent press, and this latest release is no except. Now with The Real Experts, the press has given parents have one more resource to aid in understanding and helping their autistic children.