- Stella Shea
Autism and Advocacy
Advocacy, Webster’s online dictionary describes it as, “: the act or process of supporting a cause or proposal : the act or process of advocating (see advocate entry 2) something.” (https://www.merriam-webster.com/dictionary).
Most of us reading this can most likely relate to that definition and have most certainly stood up, fought for, spoken for and pleaded for a family member or friend to have their needs met, voice heard, and rights respected. Many people most likely assume that advocacy is the basic act of fighting for someone’s rights to be met, such as a disabled person in a wheelchair to have appropriate access on sidewalks, in venues and restaurants. Perhaps it means that a deaf person has the right to ask and be supplied an interpreter of visual reader, the blind be given access to braille or oral interpretations, or that a someone with a severe nut/food allergy (such as my oldest child), be provided with a safe space to eat and given alternatives.
All these and more are more familiar (to the general public), disabilities, as well as being somewhat visual (deafness and food allergies are not always apparent upon first meeting). All these people’s needs deserve to be met and advocated for so they can participate fully in everyday life in the most practical and safe ways possible and rightly so. Furthermore, whether their disability started as a child or developed over time and in adulthood, the fact remains that their needs and rights are met. Unfortunately, that is not always the case, and advocacy at any given time may be needed.
Well, what about Autism you ask? Yes, what about Autism? I am the daughter of an un-officially diagnosed Father, I am the sister of a formally diagnosed Brother and I am the mother of four children (three formally diagnosed, one pending evaluation), Autistics. Our family chooses to use first person language. My children claim their autism and have little issue talking about it, being talked about in respect to being autistic and have started advocating for themselves as autistic people. But what does that mean? What does it look like to advocate for an autistic person? Why is it so darn hard to be heard, seen and listened to as an autistic family and members of society? That is an excellent question, and one that needs answers, now.
Autism is often referred to as an invisible disability, and autism as many of you are probably aware, often comes with comorbidities, that is to say, an autistic person usually or often is not only autistic, but also often accompanied by something else such as seizures, ADHD, DMDD, Dysgraphia, Dyslexia, anxiety, SPD, allergies and insomnia just to name a few and those are the ones our family is personally dealing with at any given moment. The various added issues can make some of the hard parts about being autistic, perhaps more challenging, and yet it is some of those issues that we as parents can use, have to use, to get our kids the help they need, to have their rights met. This to me, while helpful I suppose, does not entirely sit well with me, or my family.
So, I advocate. I talk. I write. I might even tell some people off from time to time. I educate. My autistic children, your autistic children. Our autistic adults… should ALL have the right to be in public places, to have space, to be provided with things they need so they can engage in community, enjoy a movie, shop, do whatever it is the rest of us to do to live day to day and the tragic truth is, that’s just not the case. I know autism can be really, really hard. We’ve had really, really hard days in our family. I know autism does NOT look the same for every autistic individual or family. However, I’ve also seen how beautiful, incredible, astounding and profound autism and autistic individuals can be. Talented beyond belief. Comprehension of things I can’t wrap my mind around. An empathy that really can’t be matched. However, the general public doesn’t understand what we families see under the surface. They don’t see the amazing people we love, and they don’t see the struggle either. They can’t comprehend why lights are too bright, noises are too loud, crowds are too large, or why homework is often too much, days are too long, clothes are itchy, or water hurts.
There are a select few companies and entities that do offer on occasion, a “sensory friendly” movie experience for example, or tagless, softer clothes (such as Cat & Jack), or employers who will compromise on a work situation, or schools/teachers who will and do follow accommodations. The truth is though, so much of that is too few and far between and most accommodations, allowances, and autism friendly venues stop offering these things once an autistic person turns 18. Why? It’s not like they stop being autistic at that age, ask my 40 year old brother. The struggle is very real for him. He was diagnosed at the age of 19. I have helped him fight to have a job, to learn to drive, to get appropriate medical care. We’re still fighting. He lives in a part of the country where they are definitely behind the times in providing appropriate help for someone like my brother who doesn’t “look” like he needs help, and yet he does. It is the most frustrating and aggravating situation. And it is more common than you think.
Colorado as I understand it, is #2 in the nation for Autism resources for kids, and yet they are only marginally ahead of other states, when it comes to adults. 10 year waiting lists for housing/ or housing help. Medicaid that doesn’t adequately cover rent, food AND utilities. I have an adult autistic friend who has to live in an undesirable part of the city, in an apartment complex that is not well kept up because he can’t afford to live anywhere else and there is no help. He has a job plus assistance and it's hand to mouth. Why? Because he doesn’t “look” like he's disabled? His autism is considered “mild.”
So what about my mom friends who have severe needs children, who cannot go to the store, on a playdate, or run an errand without assistance? And yet, they can’t get that assistance, past the 9-5, M-F, and in many cases not even that, or they can’t get more than the bare minimum. In these cases, the parents and the children are unable to fully participate in life activities, because their needs are too great and no one is advocating for them. Most can’t afford private help for the weekends, holidays, or weeknights. The most tragic outcome to this issue is that these children aren’t able to thrive, they are not being given the opportunity to reach their potentials within the limits they have because they are not being given a chance to begin despite the valiant efforts of their parents and providers whose hands are tied. This should not be an issue!
So what can we do? We advocate, we speak up, we talk to our doctors, our teachers, our school boards, our legislators, we write letters, emails and make phone calls. We talk to movie theaters and ask if they’d be willing to have a standing once a month sensory friendly day, we talk to job coaches and ask if they’d be willing to educate themselves about autism so they can appropriately coach and help our autistics get the right kind of job for them. We write and email CEOs of various companies and ask them to offer, to create autism friendly jobs and work spaces. We talk to restaurants and ask if they’d be willing to offer low light seating, a quiet corner and some simple staples. I understand that there are many autistic people who just prefer to be at home and stay at home, and that is 100% ok, but I’ve also met many families, mine included, who have kids and relatives who do enjoy going out, to participate in the community but just have difficulty doing it in the same way as Neurotypicals. In this current day and age where our society seems to cater to everyone else, isn’t it time we give our autistics and their families the same opportunities to shine? To make friends? To enjoy community, to work, live and to THRIVE.
I advocate for my children to live, work, love, laugh and enjoy their lives as autistics in a community, in a world where they get to show how truly amazing and incredible they are even with the hard, maybe even in spite of it.
Stella Shea is a SAHM, Autism Advocate, Educational Consultant, Academic Evaluator, sometime writer and full time homeschooling mom of six kids who enjoys writing, teaching, coffee, good friends, good conversation, sleeping in, her garden and runs a group on Facebook for moms of Special Needs kids to connect and find self-care.