I was recently asked to speak at at Autism Awareness Month event that was held by the exceptional education department of our local school system, and the audience was parents of autistic children. This is the transcript from that event, and is basically most of what I want to say about autism and neurodiversity all crammed into one post. But first some disclaimers: I am not perfect, I screw up all the time, and am still fumbling my way through this parenting thing.
I am also not an “expert,” nor am I Autistic* (see update), although I am neurodivergent. I am a mom and an advocate and a writer, and I learn through experience, by asking a lot of questions, and by doing a lot of research. (*UPDATE: A few months after I wrote this post I was unofficially identified as on the spectrum by a therapist. In my FORTIES. It was based upon her observations rather than diagnostic testing, but nevertheless it was a revelation.)
My perspective may also be different than yours, but one thing I have learned along this journey is to not devalue someone else’s opinion just because their situation isn’t the same as my own. We should be open to considering one another’s viewpoints. We also should avoid the danger of turning this into a competition of whose struggles are worse, and unfortunately we have all seen that happen.
(Image is inspired by the post “20 Things That Parenting a Child With Special Needs has Taught Me About Life in General.”)
We ourselves may have fallen prey to the dangers of comparison, by saying things like, “Well, at least your child can…”, or “You don’t know what it’s like to…” Friends, let me warn you that kind of thinking is a trap. Parenting is hard, I know that. Some days are exhausting and even sad. Life in general can be hard, and living with any sort of disability can be hard. But we are all in this together, and no matter where we are, or where our children are in the journey, we can learn from one another. Then when we get weary we have each other for support.
One way I try to help encourage other parents and support the Neurodiverse community is by writing and sharing my voice. I hope to help make the world a safer place for those who are different. I want to help de-stigmatize DIFFERENT. Because without our differences, the world would be VERY boring. Different is the new normal!
So I came up with the slogan: See Different, Be Different (image at top of post). Different is not bad, it’s not broken, or as Temple Grandin says, different is not less.
This is a picture of my inspiration, my incredible son. He is enthusiastic and funny and every day shows me a new perspective on the world. And he is autistic. I know we have had it drummed into our heads for years that person-first language is the only way to go, but there has been a recent paradigm shift. An increasing majority of adults who are on the spectrum now prefer IDENTITY FIRST Language. They don’t see autistic as a bad word, and embrace it as an integral part of their identity. They want others to accept and respect them as whole individuals, not as broken people or objects of pity. Therefore I respect the way they wish to be identified and I use the word autistic.
As parents of autistic children it is encouraging to listen to the voices of other parents like us. But we also could learn a great deal from individuals who are actually autistic. They communicate with us in all different types of ways. Some through speech, some through sign, some through technology, and some through behavior. Because, as they say, behavior is communication. Even if someone is not speaking with words we should still presume competence, and we would do well to avoid assuming that they don’t understand us. Never underestimate them !
Some previously non-verbal individuals have communicated later in life, “I heard and understood EVERYTHING you said about me when I was younger, and some of it hurt me.”
We need to be receptive to seeing the unique ways that autistic people communicate and even learn, instead of being blinded by our own expectations.
By the way, I talk and write more about my youngest than his older brother because that’s how they want it. I am equally proud of both boys, but I respect their wishes and their privacy.
You may have seen my son in the media when they shared a video of him playing with a sea lion at the zoo. She started following him back and forth in a game of follow the leader, and he was ecstatic. It was joyful and easy for him, which is in stark contrast with the struggles he often has when interacting with other children. So when he cried out, “SHE LIKES ME!” it was bittersweet.
My son is expected to fit into a Neurotypical world, but that world isn’t always easy for him or accepting of him. It’s full of distractions and expectations and even people who are cruel. So when I see him find a moment of pure bliss it means the world to me as a mother.
He and I talked after our visit to the zoo that day, and we decided to share the video, that we named “sea lion shadow,” and also share a bit of our story. The response was surprising, gratifying, and at times overwhelming. It reached all over the world, and it was amazing that a happy video could also help, in some small way, to make the world a better place and spread Autism ACCEPTANCE.
Something important to note is that I NEVER share anything that would embarrass my son. I get his permission before I share. He is not something to be objectified. Sadly, a few media sources did turn his sea lion video into more of an “inspiration porn” type of story, but I had no control over that. Thankfully most did not, and I contacted the few news sources that I thought really got it wrong and respectfully asked them to revise their wording.
If you are wondering what I mean by inspiration porn I wrote about it more in the recap of an interview with Christopher Ulmer.
He is an exceptional education teacher from Florida who is on a mission to help spread the stories of Neurodiverse individuals, with their permission, in a positive and empowering way. Some of you may have seen his video where he starts out every day complimenting the students in his classroom.
My son and I recently had the opportunity to interview him, and here is a picture of them having an eyeball crossing contest during the Skype conversation. I became acquainted with Chris online when he first started his project, Special Books by Special Kids, and it was incredible to watch his message and platform spread into MAINSTREAM media. That is incredibly helpful, because the world is often a cruel place for our precious children. Some openly mock those with disabilities, or simply see them as a burden. When we talk about disability acceptance far too often we are “preaching to the choir” and only reach our own community, and Chris wanted to expand the reach of the message. Another reason he started his project is he watched a group of his adult friends have no idea how to interact with his exceptional education students during a soccer game. So he said, “I thought that if we could provide that platform for them to understand the children, understand the human side of them, that hesitation would be erased.”
So how do we CHANGE things? What is it we hope to accomplish by speaking up? It’s not enough to raise awareness. We should also try to help promote ACCEPTANCE. I share some thoughts about that in the post, “Autism ACTION Month.”
We can start in our own community, and in our own homes. We can be honest with our own children when they have a disability, acknowledging their struggles and helping them find their strengths. I did it with my own son when he came to an age that he was finally old enough to recognize and articulate that many things that seemed to come easily to his peers were difficult for him. (A description of that is in the SNB article called “The Talk”.) I wanted to be very careful so that he didn’t see himself as flawed, or view his diagnosis as an excuse or something that limited his expectations of what he could achieve in life. I wanted the truth instead to be empowering. I hoped that having knowledge of his Autistic brain would help him be more patient with himself and learn coping mechanisms so that he could better deal with frustration, distraction, and anxiety. I hoped that he would be able to tap into the unique way that his brain processes information and use it to accomplish great things. An additional hope was that, as he grew, it would help him have a greater sensitivity and acceptance towards others around him who may also be facing struggles of their own.
We can also help teach their peers to do the same. I believe honest dialogue about diversity and disability is crucial to acceptance, and that children can be surprisingly open-minded. The trick is to explain those differences in a matter-of-fact and positive way, before society can affect them with its stigma and prejudices.
It used to be a taboo subject, but actually NOT talking about it is what gives the impression that it is something shameful. Kids know when someone is “different,” but they don’t realize the reasons. And the reasons they imagine are much worse than the facts. But if you tell them, “different is okay,” they will believe you.
This is especially important in the classroom. Many children in exceptional education are mainstreamed at least part of the day, but often they and their parents feel that it is not an atmosphere of true INCLUSION. We can work together with teachers to help promote an atmosphere of understanding and respect. I was inspired by a presentation given once by a leader of our local Autism Society chapter, who had talked with her own son’s classmates about Autism when he was in school. She felt that it was important to share with classmates about strengths first, then weaknesses, and then involve the other children by stating ways that they could help.
The number one web search that brings new readers to the blog is “How to describe autism to classmates,” which I describe in the post, “The Star.” My son and I actually started sharing with his classmates about Autism when he was in 1st grade, and have continued for many years. We always do so with the teacher’s permission, and the way his classmates have responded has been amazing (see above picture). They routinely step up to help him when he struggles, and they even defend him when necessary. One time a substitute teacher kept scolding him for being out of his seat and some of his classmates spoke up and insisted that his pacing back and forth was allowed and that he needed it.
It’s actually written into my son’s IEP that his desk be at the back of the room so that he can get up when he needs to. He told me once that after he concentrates really hard he feels like he isn’t in his own body, so he has to move around again to feel REAL.
I would encourage you to work with your child’s teacher to make the classroom safe and comfortable. Discuss ways to adapt to your child’s sensitivities, like movement breaks, respecting their need to stim, and not forcing eye contact (especially when they feel overstimulated). Then put it in the IEP.
I know sometimes those meetings are not easy and we may have to let out our inner T-Rex, but hang in there. Remember you don’t ever have to sign anything with which you are not comfortable.
My family is thankful to have had a series of incredible teachers and others on our team over the years who have helped my son to thrive in the classroom. It has taken a lot of work and communication, but we work together and I know they all have his best interests at heart.
Now back to that word I mentioned earlier: NEURODIVERSITY. I encourage you to read the book, “Neurotribes,” by Steve Silberman. In a recent book talk he said this: “We’re evolving as a society from viewing people with autism merely as checklists of deficits and dysfunctions — seeing them solely through the lens of pathology, only in the light of the things they can’t do or struggle to do — to viewing autism as another way of being human, with its own distinctive strengths and positive attributes as well as profound challenges.”
That is the essence of the Neurodiversity movement. When I am say I am Neurodivergent it is because I have ADD and Sensory Processing issues, among other things. I spent my whole childhood feeling like I wasn’t good enough, struggling to relate to my peers, struggling to keep organized with my academics even though I was actually really smart (if I do say so myself). Teachers thought I was lazy, when really I was just overwhelmed. What I really needed was for people and teachers to accept me, encourage and affirm me to help me believe in myself and learn how to overcome my struggles.
I want better for my own child than what I experienced growing up.
Another author I really appreciate is John Elder Robison, author of “Look Me in the Eye,” and “Be Different.” He describes himself as Autistic or Aspergian, and he is on a mission to help support autistic individuals in the collegiate environment. I met him about a year ago and we stayed in touch after he spoke at a local Autism Society meeting.
John wrote in an article for Psychology Today, “We can accept that neurological difference is a natural part of us while still working hard to minimize or eliminate its negative effects. At the same time we should recognize and celebrate the very real benefits difference confers on many of us, and embrace people as they are because that is reality. As with any disabling difference, a parent may wish things were otherwise, but they’re not and unconditional acceptance of our loved ones is the healthiest way forward.”
(Note for attendees of the event at which I spoke: If any of you are interested in being a part of a local Neurodiversity group please contact me. You can like the Seriously Not Boring Facebook page and send a message there, or send an email to seriouslynotboringATgmailDOTcom. This group would be composed of autistic individuals and those who support them. One of the goals would be to help equip and support autistic individuals in the educational setting as well as finding and keeping meaningful employment.)
There is a BIG world waiting out there for our children. We want to help equip our children for that world, and CHANGE the world to be ready for them.
Now I KNOW Autism is a very wide spectrum. It affects each person and their families differently. I know that for some of you the concept of Neurodiversity may sting a bit. We are all in different situations, and in different places in this journey. But I think we can all agree that what we ALL want is for Autistic people to be treated with respect and dignity, to feel accepted and secure, and given every chance possible to have a meaningful life. And if we all speak up, and work together, we can help achieve that.
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