I've been there every step of the way, from his five week early birth, through kindergarten struggles, kids picking on him in school, home schooling, graduation, getting jobs, losing jobs, looking for friends, mental health crisis, fears and joys.
I have had a ringside seat to the significant life struggles of a high functioning aspie, who possesses several challenging expressions on the spectrum.
After nearly twenty one years of helping him deal with our how our society reacts to him, advocating and fighting for his right to exist in America, I can promise you that I am exhausted, even while my life is full. Sharing his world and experiencing his joys and failures has been at times exciting, fulfilling, but far from easy.
I have fought educators, educated law enforcement, shaped and adapted his environment in more ways than I can count. Example: before we go to eat at someone's house, I send an advance list of triggers, such as crunching potato chips. I try to educate friends and family on what to expect. I often feel that I am seen as an over protective parent of an adult child who should just 'get over it' and 'learn to cope.'
Though at first he appears normal to most people -- and he is good at keeping it together for a little while -- it is eventually very jarring when they finally encounter some of his ASD expressions. Because every autistic kid and adult are unique in so many ways, it just hard. I have to start nearly at ground zero every time we have a new doctor, or a new pastor at church, or new neighbors, or just anyone new who wanders into our lives.
Last night my son had a breakdown. It was triggered by missing his medication the night before, combined with a bad day at work (he unexpectedly had to work extra hours). I knew I was in for a bad night when he kept calling me from work, and it was clear to me he was quickly sinking deeper and deeper into a perseverating depression. It lead to threats to kill himself, as it often does. I knew I would be up literally all night working to help him climb out of this hole he had fallen into.
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| My autistic child loves trains, too! |
I know my son pretty well by now. Last night I pulled out a trick I had been saving for just such a dire situation. Like many autistics (and neuro-typicals), my son has a love of trains. The Empire Builder Amtrak passenger trains come through our county every night around 3:00 am.
Around 1:00 am, I was able to buy him an Amtrak ticket on the train, departing our county station to the next stop about 60 miles away. The cost was $15. Here it was, about 2:30 in the morning and we are pulling up to the small train depot. Right on time the train pulled in, and he excitedly boarded. I raced along the road for an hour in the car, meeting him at the next station just as the train was pulling in.
The unexpected experience pulled him out of this episode and helped reset him emotionally, at least for now. We had breakfast at an all night cafe, then returned home by about 5:30 am. As I write this, he is sleeping through the morning. Thank god he doesn't have to work today. Thank god for that.
I DO have to work today, though, and I have not slept a wink. For some reason, in my exhausted fog, I decided to get the story out of my system by writing this article. I also need to find ways to cope with his depression as well as my own.
I love being my son's father and I wouldn't trade the experience for anything. But it is very, very difficult. And there is very, very little support around here for fathers (or mothers) of autistic adults.
His mother and I are each other's support system. While he was in school, we had a basic support system of therapists, teachers, county social workers, and a more generous healthcare plan. As he transitioned toward adulthood, that system dissolved. I'm sure they were glad to see him graduate.
Now we are left wondering.... what comes next for our autistic adult? We are left with questions like, will he ever be self sufficient? What happens when we are not around any more? Will he kill himself one day? Will he ever meet someone and fall in love? Will he be happy?
The point of this story (which is just one small story of many from the past 20 years), is... who else can do this, except me and my wife? I am just one of the two people on planet earth who love this young man enough to intervene in a manner that is effective, but highly stressful to ourselves. There's nobody I can call for help at 2 am. Nobody else who can know him enough to intervene in the manner I did, which was exactly what he needed to avoid a long disabling depression. I take some of that pain on myself, so that he can continue as best he can.
This is what I have to do, but it is not sustainable.
As for myself, I am also medicated with Wellbutrin, which helps me cope with the lowest lows. I believe that my son is not the cause of my own struggles with depression.
It comes from the struggle that he, his mother and I face every day fighting an autistic unfriendly world.
For parents of high functioning autistic children who are careening toward adulthood, my advice is prepare yourself, and strengthen your support system as much as you can. Our society is oriented much more toward tolerating and helping autistic children than autistic adults.
As for me, I have more questions, fears, and exhaustion than I have answers. Although I'm quick to offer advice, I'm also glad to receive it. Feel free to post below.
