Meet Carol Greenburg:
I got my diagnosis of Asperger’s syndrome when I was 44 years old, about two years after my son was diagnosed with ASD at 31/2. I never had any kind of speech delay, but my speech pattern has always been mannered. I was consistently bullied during my childhood, by other children and occasionally even by adults. for using “big words.” By contrast, spoken language is my son’s most obvious challenge, though it is clear to most people who know him that he understands almost everything said to him. Presuming competence and comprehension is a good plan for communicating with all autistics, but I think it is particularly important in dealing with my son. His problem-solving skills are impressive so he almost always finds a way to get across his meaning, with or without spoken or written words. This year, if he is willing, I’m hoping he and I can work together on learning to use AAC (Assistive Augmentative Communication) technology. Although his speech and writing improves daily, I want to respect all avenues he might need to communicate even more fully. For my part, like most autistics the slightest stress can cause me to lose some degree of spoken or written language I can easily access when I’m in my comfort zone. I often say I’m always one siren or squealing tire away from temporarily losing all of my language, which can be dangerous especially here in NYC. My point is, despite the vast difference between our day-to-day uses of communication, in an emergency, either one of us could end up in a similar situation, unable to express our most basic needs or understand the simplest instructions.
What are some of the challenges you face as an autistic parent?
Competing Needs. We both experience constant sensory input, light seems brighter, noises seem louder, details that non-autistics are likely to miss stand out to us, etc. Our reactions to that input are different, though. The input physically hurts my ears, eyes, etc. so sometimes I react by dulling it with sunglasses or headphones, sometimes by removing myself from environments that overwhelm me. His way of coping with increased sensory input is different from mine. He does sometimes indicate that he wants out of the environment, but rarely as automatically as I do. What he often needs to do is plant himself right in the middle of the action and investigate it until he understands it. So if there’s a noisy fan, I prioritize blocking out the sound. I cover both ears, duck my head, and turn toward the wall. He , by contrast, is likelier to partially cup one ear, and circle the fan peering at it’s components until he figures out exactly where the noise is coming from, vocally imitating the sound all the while. Once he integrates the input, he sometimes seems better able to withstand it than I can. So the challenge is, when we react to different needs with different coping mechanisms, which way of coping wins out? Do we leave the area, which frustrates him, or do we stay longer so he can investigate, which causes me pain that can impede my ability to protect us from strangers’ sometimes hostile reactions to what they interpret as our odd behavior. It’s hard to negotiate a solution in the moment.
What are some of the ways that being autistic helps you be a parent?
Bluntly put, I think I’m more likely to “get it” than a non-autistic parent. My son and I have different experiences of this world that isn’t designed for our brains, but I do know exactly how it feels to be penalized for violating a social convention I don’t understand. I believe we both resent all the rot about our alleged lack of empathy, as scientists are only beginning to study the “intense mind” theory we’ve instinctively understood all along. I get the drowning sensation of other people’s emotions washing over me in waves I cannot process in real time. Most importantly though, I can serve as a role model in a general and in a specific way. My son and I have always been and will always be autistic. Even if I bought into the all the clamour for “a cure”, which I emphatically do not, that’s not going to happen in either of our lifetimes. So not only does he see me as an autistic comfortable in my own skin generally, but he watches carefully as I model various coping mechanisms and self-advocacy techniques. He is, of course, free to adapt the ones that work for him and toss aside the rest, which he has already made abundantly clear to me.
What do you want other parents to know about your family, yourself, or being an autistic parent?
The obviousness of autism des not directly translate into an individual autistics’ level of need. My son’s autism is pretty obvious to anyone who has had any contact with autistics. Mine is largely invisible, which is part of why I wasn’t diagnosed until middle-age and why I’ve had no access to services I needed and still need. My son does have access to high-quality educational and medical services on the upside, but on the downside he’s still occasionally exposed to so-called experts who, however good their intentions may be, can do more harm than good with misguided interventions. What all families of autistics need to know is that a constant, but courteous level of vigilance and communication with autism professionals and autistics, will increase their autistic family members’ options.
I know there’s a lot of negative things written about autistic parents, so how can we change that conversation?
If you go to my Twitter feed, @aspieadvocate, you’ll see in my bio that I call myself a Fangirl of @stevesilberman’s New York Times bestseller and Samuel Johnson Award winning masterpiece, NeuroTribes. Full disclosure, my family’s story is in it, and many autistics and parents I know are in discussed in it too. But beyond my usual self-aggrandizement, and fondness for the author and many friends leaping about in the pages, NeuroTribes up-ends everything most experts thought they knew about autism. Whoever you are, whether you’ve spent most of your life around autistics or think you’ve never met one, (In which case you are mistaken. You have.) this diligently researched and beautifully written book has already irrevocably changed the autism conversation. If you lack internet access, politely demand that your nearest library order several copies, as there will be a waiting list for eager readers. If you have internet access, the minute you finish NeuroTribes, visit the websites and social media outlets for autistic-run organizations such as Autistic Self- Advocacy Network, and Autism Women’s Network, and Thinking Person’s Guide to Autism (for which I am one of a small, but merry band of Neurodiverse editors) All of these organizations can point you toward a cornucopia of autistic writers, visual artists, and musicians.
What services might help autistic parents?
I’ll start by describing my own greatest struggle. Autism professionals might refer this current struggle as “difficulty generalizing.” I am a non-attorney special education advocate, helping parents get appropriate special education services for my kid and theirs. I thought my skills as an education advocate would translate easily to Medicaid advocacy when it came time to apply for Medicaid, a service my son needs now, and especially in the fast-approaching years of transition to adulthood. I was right about his need, but so very wrong about my ability to get it for him without support. Just as my son needs one-to-one instruction for his education and therefore attends as private school with a one-to-one teacher student ratio, I need one-to-one support getting and keeping Medicaid services. I’m light years from achieving that goal Now, imagine I weren’t a formally educated, financially privileged white woman: if I can’t get anywhere in the Medicaid system what chance have autistics of color, or LGBT autistics and their kids? What if English weren’t my first language, or I covered my head for religious reasons? The gulf between person-first social services rhetoric and actual services is horrifying, and unless the government delivers on promises already made and presidential candidates from both parties start answering specific questions with detailed plans about everyone’s access to services, that gulf will widen.