Parenting A Kid With Autism When You Have Autism, Too

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers. Today’s post is from Carol Greenburg, executive director of New York Special Needs Consulting. Carol is a special education consultant with a unique perspective: she is an adult with Asperger syndrome and the mother of a severely language-delayed autistic child. She is the East Coast Regional Director of Autism Women’s Network, a frequent speaker at conferences, universities and community-based organizations, and an editor of the site and book The Thinking Person’s Guide To Autism.

What autism means to me and my family:

One of the nicest parts of parenting an autistic child from an autistic vantage point is that I feel my son and “get” each other in special way that encourages  teamwork between us. His autism and therefore his need for assistance is more evident than mine, but he isn’t content to just receive help. He wants to offer help too.  He notices when I get into trouble, and without my even having to ask him, he passes along skills that I never mastered, especially in motor planning, an area in which he’s conquered many difficulties that I still haven’t. It’s been much easier for me to put my shoes on correctly since he’s started teaching me what he’s been taught. Sometimes non autistic people are amused when they see a highly educated, verbal person like me struggle with simple motor tasks that come easily to most adults. My son is one of the few people I can count on to never, ever laugh at me for that sort of thing, and that makes me feel safe around him.  I suspect many parents have to wait until their children are grown to experience that kind of reciprocity.

Three things I want other parents to know about my kid and others like him are…

Alone time is critical,  not just so that my son can avoid sensory overstimulation, but also because he needs quiet or even stimming breaks so he can deeply process all he’s observed or been taught on any given day.

Assume empathy. Despite reports to the contrary,  most of us are as empathetic as typically developing people, and I believe my son has a surplus of that quality.

When my child breaks something or pushes another child, he faces consequences. If he behaves in an unusual way  that is not hurting anyone or anything, I don’t apologize for him, or expect him to apologize for himself. I cannot imagine raising a confident child in an atmosphere poisoned by shame and self-loathing. When others have a problem with nondestructive, unaggressive evidence of his or my autism, it is their problem, not ours.

One misunderstood thing about kids with autism is…

There’s an assumption that the less verbal a kid is, the less independent they are in daily life, even if they need intensive support in school, as my child does. I suspect that talking is the single most difficult task that’s consistently demanded of my child. To compensate, he has learned how to do things at home for himself because he finds it easier to solve his problems quietly and creatively himself than to formulate a verbal request. He’s all action, very little talk. When a typically developing friend complained about the impossibility of reaching a cup on a high shelf, my son just got a stepladder and delivered the cup to his friend. Of course it’s important to encourage as much speech as possible, but I’m still really proud of him for cultivating self-sufficiency to cope with his language delay.

Some of the best things I’ve found to help my child are…

My son not only enjoys music and physical activity, they also help him self-regulate and regain focus. Both are inexpensive DIY coping mechanisms to address anxiety and promote focus.

My most effective parenting strategy is…

Autistic people are so often patronized or treated like we’re invisible, many of us have not experienced what it feels like to be approached with respect. So my husband and I try to consciously teach my son the concept by treating him with respect and by making a special effort to treat others with respect in his presence.

One of my favorite stories about my child is…

It’s just too hard to choose, so I’ll just offer up this week’s excitement. A few nights ago my son did something that reminded me to alway assume his comprehension. He needed a  haircut and I said so in front of him. Before I got around to taking him to the barber, he became rightfully impatient with my dilly-dallying and cut his own hair in the middle of the night. The action was his, but the responsibility for it was primarily mine. As we surveyed the bald patches the next morning, his only comment was “Not going to the barber.” I advised him not to jump to any conclusions about that. One buzz cut later he looks like a tiny,but noble, Marine. Semper fi.

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  1. by Paula C. Durbin-Westby

    On April 20, 2012 at 12:43 pm

    I love this post! Thank you. I will read it to my son. We have very similar things about “getting it” about each other. We work on accomodating each other’s sometimes similar and sometimes VERY different sensory needs. Once again, thanks!

  2. by DUSYA LYUBOVSKAYA

    On April 20, 2012 at 8:26 pm

    Despite that I do not have any children yet, I can SOOOO relate to you Carol :) !!!! …. DUSYA ….

  3. by Chris

    On April 20, 2012 at 10:03 pm

    I’m a mom with Aspergers, a husband with PDDNOS/Spectrum issues and two sons who are speech-delayed and spectrum (aged 3 and 5).

    I am trying to teach both of my sons the coping mechanisms I have learned through my experiences and research (my special interest has always been psychology). Yet, my boys are also teaching me things about myself and about how to cope with things and sometimes just laugh at myself instead of getting angry.

    The intervention therapists always seem shocked when I disclose my own diagnosis to them as I have learned to “fake normal” well for short periods of time. Exhaustion and other things can crack that facade but I don’t have to worry about having it at home: We are a quirky bunch that can go spend hours looking at planes or wandering cemeteries and get so absorbed in what we are doing that we lose track of time. I can be me with my family and we all know to give each other alone time and low-sensory times for processing.

    It can be hard at times when we push each other’s buttons, but I think that is probably true with any family. Thanks so much for sharing!!!

  4. by Sharon daVanport

    On April 22, 2012 at 12:44 pm

    I LOVE this post! “Assume empathy.” Yes! So true, and with our children, as well as all of us on the spectrum, empathy must be assumed. We’ve made the shift past prehistoric beliefs that autistics have no empathy, and we must now continue getting this information out to everyone!