Autism is an aspect of a person. It is not the entire scope of existence of an individual nor the only descriptive element of one’s personality or abilities. Often times when someone shares that they have autism or someone they know by way of friendship or family has autism, the discussion stops there. The curiosity to inquire further about passions, interests, schools, work, or relationships is stunted by assumption, sympathy, and awkwardness. The label so often shadows people’s objectivity to connect and interact naturally. (And they are supposedly the neuro-typical ones!). This sense of isolation expands to not only how the individual with autism is treated but their whole family. Friends are suddenly too busy to come by for coffee, playdates are cancelled, and invitations lost in the mail. This can lead many to connect only to the autism in their lives and forget the necessity for other things to be prioritized…sometimes because there is no one else to help and sometimes because people try to help in unhelpful ways. There are no easy answers and the numbers are growing, the services still greatly in need, and the financial and emotional burdens still hefty. Albeit, there is a way to bring about change. It starts with you. Listening to, respecting, and accepting the voices of individuals with autism is key.
We know the challenges many families deal with to advocate for their loved ones. We also must pay attention to the joys, observations and experiences of those with developmental differences. After all, aren’t they the ones we are trying to be there for? How do we advocate and make others aware until we understand and accept our own experience with our loved ones and their autism. So much is assumed, expected, and misconstrued. In fighting the good fight how do we stay true to our motivation to help someone we love, to support individuals with autism in a way THEY need, not just how we think we want them to be? How do we honor and respect individuals neuro-diversity and make sure all of the options are set before them to choose how they WANT to be? How do we ensure we are not asking our children and students to assimilate so much to a norm they lose all that makes them unique, beautiful, and in ownership of their own personality and sense of self?
Celina Miller is the mother of Jim, who was diagnosed with Aspergers Syndrome when he was in the 2nd grade in 2009. Celina has worked tirelessly to gain the education support for her son's civil right according to the Individuals with Disabilities Education Act (IDEA). Celina has worked with the Oasis Center for Women and Children and has spoken on the importance of supporting children with mental disorders and their families.
We put forth the following questions to her and her son Jim to get the acceptance conversation started…
What was the hardest thing to accept about autism?
Celina: For me, the hardest thing to accept about my son being diagnosed with an Autistic Spectrum Disorder was the anxiety I felt about how to move forward in a positive and productive direction for him. We’d had Jim tested because he’d exhibited signs and symptoms, so it came as no big shock that a diagnosis followed. I imagine like me, most parents aren’t really shocked that there child is diagnosed; they probably suspected an issue which is what led them to have their child tested in the first place. The hard part came with locating services and deciding how and where to find solutions to help our son be the best version of himself. It was hard for me to accept that treatment options and services were so difficult for me to locate and provide for my child.
What was one of your worst moments of feeling "unaccepted" by others because of autism or your son's behaviors?
Celina: The absolute worst moment, rather situation that I experienced was when Jim’s school did not accept his diagnosis of Asperger’s and would not provide him with and IEP (Individual Education Plan). I couldn’t believe that the school would deny him his civil right to receive a Free and Appropriate Public Education. I truly felt like Rosa Parks having to sit at the back of the bus—I felt less than human, less than equal. I couldn’t believe that in this day and age, this type of discrimination and violation of civil rights existed. Jim was unaccepted by his school, and because of this, he was treated unfairly and unjustly. As it turns out, infractions like what happened to me are pervasive across the country; children with Autistic Spectrum Disorders are denied their civil rights to an appropriate education every day.
We moved from that school system to a place that was accepting and open to educating everyone!
Jim would say that he’s never felt unaccepted because of his Asperger’s. I think that’s the beautiful quality he has—self acceptance. If only we all had such courage to move forward through life, being at such ease with ourselves.
What do you think is the hardest thing for other people to accept about autism?
Celina: I think the hardest thing for other people to accept about autism are the differences those affected with ASD present. People with autism act in a different way than people who are not affected, no question about it. They may speak differently (or not at all), they may stim, not look at you in the eye, or shy away from the crowd. That can seem scary and uncomfortable for people not familiar with ASDs. But even though people with autism act different, the truth is, that they have gifts and talents, and just like everyone else, they want to be loved and accepted by their family and peers.
Jim: “It depends on what type of autism you have. Severe autism (non-verbal), it would be harder for people to accept, because people can’t talk to them. But for people like me, with Asperger’s, I don’t think it’s hard for people to accept.”
Celina: He feels accepted. Hearing this, I feel like I’ve done my job as a parent to allow him to grow and feel loved for who he is—regardless of anything else. I would also like to mention, we live in a very close-knit and accepting community, by design. This was not always the case; we moved away from a community and school system that was not so accepting. I recognize and very much appreciate the fact that Jim’s current peers and their parents have such a high level of acceptance. I want that for everyone affected by autism. That’s why I’m the advocate that I am.
What is the easiest thing to accept about autism?
Celina: The easiest thing for me to accept about Autism is my son—he’s an amazing person. He’s truly one of the kindest, funniest and most loving people I know. But I don’t accept him because he has autism, I accept him in spite of autism. I accept him for the human being that he is.
Jim : “I have Asperger’s, and that makes me awesome.”
What is the fundamental difference between "awareness" and "acceptance"? And why does that difference matter in terms of how we understand and interact with autism today?
Celina: The fundamental difference between awareness and acceptance is action. In my opinion, awareness can be likened to seeing a person whose car is broken down on the side of the road. Acceptance is stopping to offer help. Now that we all know about autism, it’s time to act upon that awareness. This is true acceptance.
Where do you think the future will take us?
Celina: I believe that so much lies in the future with regard to autism. First, I think in the future we will discover what contributes to or causes autistic symptoms and behaviors. After identifying the factors that contribute to autism (such as environmental factors, genetic factors, birth trauma, prematurity, etc…) we will be able to help prevent some of these symptoms and allow people affected with autism to reach their potential just like everyone else.
Second, and perhaps more immediately, I believe the educational system will step up to the task of providing for the fair and appropriate education of people affected with an ASD. Federal law, IDEA, mandates that each child receives a Free and Appropriate Education, which means school systems must adapt to educate all of their students. With the number of people being diagnosed with autism increasing, it’s imperative that the education system really look at how they’re teaching this growing population.
Third, with proper education, treatment and services, the future is hopeful for people affected by autism. They will have the opportunity to lead productive and fulfilling lives, just like everyone else in America. Hope! This the future of autism.
What do you think the teacher's/therapist's role in acceptance is? What is society's role? (strangers, bus drivers, business owners, etc)?
Celina: Society plays an important role in acceptance. Teachers, school administrators, therapists and doctors, need to become engaged in the dialogue that surrounds autism. Anyone who works with children affected by an ASD has the responsibility to understand the complexities of their student’s issues, as well as the issues faced by their families. Accepting that changes need to be made in order to educate and serve everyone affected by autism is essential. Further, society in general, those who don’t necessarily work closely with people with autism have the responsibility to accept other human beings, just as they themselves are accepted. In this country, we are fortunate to have freedoms that are not exclusive and not based on race, religion, sexual orientation, or gender. These freedoms and opportunities should not be based on neurodiversity either. Differences exist in people, but we’re all human—access to proper education and civil liberties should be the same, autism or not.
How does being an "autism accepted" business or organization benefit the community?
Celina: Having an “autism accepted” business model can help benefit the community in numerous ways. First, people with an ASD often have a skill set that is highly sought after in areas such as math, programming, or statistics to name of few, which are very valuable in certain professions. Additionally, employing people affected with autism will give them an opportunity to integrate easily into society, providing for themselves and reducing the “burden” on society that is now being seen with an older generation of people with autism. In the past, perhaps, people with autism didn’t receive proper education, therapy or training in self-help skills and are now affected by homelessness or placed in group homes.
Is having Asperger's difficult to accept? Is getting others to accept it a challenge?
Jim: Not really. To me it’s kind of easy. I don’t think of myself as any different. Maybe some other people who can’t speak or something. But not me.
Celina: I would say, from my perspective, Jim goes through challenges as a pre-teen, 12 year old boy. These are growing pains everyone experiences, perhaps they experience them differently, but all young people have to move through life
Why does acceptance matter to you?
Jim: I want people to accept me for who I am, not because I have Asperger’s. Next question.
Breaking Barriers: And on that note, we leave you all to contemplate, take action, and get informed. Don’t just pick up a brochure, TALK to people with differences, learn something, share your experiences, and be connected and open. Its not about autism really, when you think about it…it's about humanity. We all have a shared experience, it's time to remember what we have in common and celebrate the differences that make our society so free and so diverse. Cheers, to a great today and an even greater tomorrow!