Neurodiversity

“Join Autism Speaks in celebrating World Autism Awareness Day on April 2 and Light It Up Blue to help shine a light on autism. Whether it’s your front porch or your local city hall, an office party or a banquet, the whole world is going blue to increase awareness about autism.

Light It Up Blue, in its third year, is a unique global initiative to help raise awareness about the growing public health concern that is autism. Iconic landmarks around the world will Light It Up Blue to show their support.”

Click the banner below to pledge your support and tools to help you get Light It Up information out to your friends, families and co-workers.

When one person in the family (or more) has an autism diagnosis, that generally means the entire family wears that diagnosis too. From the minute a child starts exhibiting autistic type behaviors the dynamic begins to change. No one needs the diagnosis to feel this, it just happens. With restrictive behaviors, lack of social skills, tics, tantrums and melt-downs – the family life starts to change. As a parent of a child who exhibited spectrum behavior from 18 months old, my husband and I lament on what we could have been doing as opposed to what we really have done over the past 7 or 8 years. Every occasion that should have been special has been an exercise in control, physical exertion and over-vigilance, every vacation has been an exercise in apologizing, explaining and retreating, every event we attend has to be carefully planned, explained and thought through, to the point where generally we now just opt to stay home. Vacations are just tough, the transition from home to a strange place sets us up for failure, after a couple of days, we start to groove again, but then when we leave to come home the transition anxiety begins again. It’s almost not worth it. Summer camps are out, play centers don’t work, babysitters are unequipped to deal with the onslaught, even the swimming pool is too stimulating or he reacts to the chlorine. It’s a lonely, frustrating life which could easily be open to resentment on our part. The whole family enters a twilight zone.

I think in general most parents are good parents, the same stands true for parents in families with autism spectrum disorder. Trust me no one encourages their child to spit, hit, lick walls, chew shoes, throw tantrums on a deafening level, jump from absurdly high places, or run into traffic. The look on the parents face when their child starts these behaviors isn’t apathy, in general it’s panic, or something akin. At least I know that’s what you see on my face on a daily basis. We can all feign bravado and say “we don’t care what other people think” after all logically we know we can’t control that. What other’s think is their own business. The reality is, when you know other people are judging you, both through your child and your parenting skills, you instantly feel inadequate. Even though you know that the problem is not your parenting it’s a neurological one. In the end it doesn’t matter, you always feel like you could be and should be doing more.

Occasionally I will see a younger women, heavily pregnant, or with little babies looking at us, even commenting, making judgments. I want to walk over and say “Trust me, we have been the “needs more structure, discipline, never let my child act THAT way” people. Yes, that was before kids and certainly before special needs kids.” Part of me wishes I had my son’s unfiltered way of speaking. Sometimes his observations, while not to be shared at high volume, are correct. It sometimes IS the other kids, it IS often unfair that my kid gets disciplined and the other child doesn’t but the reality is he is more aggressive, more combative than many other kids so he is usually the last one standing, and by default he is usually the one who seems to be causing the trouble!

So we all stay home, parents, brothers, sisters… all affected by this thing called a spectrum disorder.

I read many articles about autism, some are super serious, some damning, some thank goodness are hilarious and tongue in cheek, but honestly being a family of autism is harder than anyone can imagine. It isn’t really very funny and it isn’t a case study, its just plain hard and annoying much of the time. The help is limited, and often you are caught in the middle of well meaning “oh that’s extreme, over diagnosed, just a boy, hokey, doesn’t work, isn’t safe, are you crazy to do nothing other than behavioral therapy.” When you are in the trenches you grasp at anything to give you a leg up to get out. ANYTHING. In the end, with money depleted and traditional therapy exhausted and only small progress made or worse no progress, where do you go from here?

Over the past two years there have been too many stories of what happens when resources, patience and sanity wear out. What happens after you are gone. The idea is scary, sad, worrying and the reality is harder. The entire family can become isolated.

The Impacts of Autism on the Family, By Rachel Evans -: “… Raising an autistic child is challenging and can be exhausting without support. …” To that I have to say “and then some.”

This from the Colorado Springs Gazette highlights the ultimate end to the isolation and exhaustion that is the other side of autism. “The deaths of Rene Ogden and her teenage twins, Chase and Olivia, have been ruled a case of murder-suicide – and Michelle Linn isn’t surprised. … ‘I can tell you: As soon as I heard the story on the news and someone mentioned that a special ed bus went to their home, I thought, ‘murder-suicide-autism,” said Linn, board president for Alpine Autism Center, a private nonprofit treatment center. “I don’t condone it, but I can certainly relate. You always wonder, ‘Could that be me who snapped?’” … Or this From Lives Lost to Autism “Maryland Psychiatrist allegedly murders 13 year old with autism, self…” These are not the only ones, just recently another murder in the Bronx “Autism is Not The New Normal: Bronx Mother (Allegedly) Murders Autistic Son,” By Kim Stagliano. Care2.com asks the question: Why Did These Mothers Kill Their Autistic Children?”

Why did they?? I imagine it is because in the end they just snapped. They wanted to make ‘it’ stop. They wanted peace and quiet, they wanted PEACE, they wanted their children to be happy, they wanted to not be so exhausted.

The Care2 article has many comments, but one stands out from a married person with autism. Her point is this: “Needless to say, we don’t think being autistic condemns anyone to a miserable half life.” I just wonder if her parent’s thought that too.

From the person with autism I get it, this is normal, this is ok. In adulthood these folks can, will and do soar, they are genuine assets to society and have meaningful, warm, loving relationships. I get that, I really do, but from this side, I am not even trying for ‘normal’ – I know in my heart I am eventually going to have raised a moral, self sufficient, contributing member of society, but mostly right now I am trying for tantrums that don’t last for 10 hours, for clothes that don’t restrict and come flying off at inappropriate moments, I am trying to keep dirty flip flops from being chewed, trying to stop a sister being used as a punch bag, trying to keep up with life on limited sleep because it is interrupted every night. I want to go on vacation and not consider everything from scratchy sheets, to windows without balconies to food choices and where to eat. I want to go to dinner and enjoy a family fun restaurant without worrying about over stimulating noises or other children being annoying.

I have posted this before, but it’s still true, both my son and I would like a day off, not a day off from each other, but a day off from whatever it is that keeps him spinning this way. He needs a break. Thankfully I have many resources, my parents recently moved here to help out, my husband is 100% on board with parenting, we have limited financial resources but relatively good health insurance, most of all we have support from our family and friends. What if we didn’t? What if it were just me and my kids? What would I do then? What would I do then?