When I remember back to my son’s early days, from toddler to high school student, it was tough. By tough, I mean “spending the night in the hospital waiting for your child to get a bed at a psychiatric facility tough” or “standing at the door, sobbing, hoping the police will not use the taser on him after you had no choice to call after he held a knife to his throat tough”. Don’t get me wrong, not all days were like this…thankfully. However, there was always something simmering underneath, a feeling of impending doom, just like you feel before a panic attack.
It took many countless hours of research, phone calls, fighting with schools and other service providers to get my son help. When I tell people that I was able to get him into what we call a “Level 5” school and he graduated in 2015, that was an eight year war, finally winning the placement the day after I buried my mother. I think they were so shocked that I showed up that they let me win (that’s more or less a fantasy I entertain, but at one point I seriously considered it a viable reason) and admitted defeat, that they could no longer educate him properly in their setting.
I didn’t feel like I “won” anything, but I did feel like my son would have a better chance at succeeding, away from the horrors of our public school system where I live, where there are few resources, little understanding and a serious lack of training and understanding for those who work with those on the spectrum.
Now that my son is an adult, some things have changed. Some, for the better, others remaining constants, but few life affirming changes that let me sleep soundly at night. Once someone becomes an adult with autism, for some observers, there is this perceived assumption that now that they are grown, they will grow and adapt along with what society expects of someone without challenges. This couldn’t be further from the truth for many on the spectrum. Certainly, there are incredible stories of rising above and finding the perfect niche, but these stories are not frequent enough, and there aren’t enough practitioners, employers and people in the community who are aware of what it takes to help the autistic adult succeed.
My son has been working since about a month after graduation almost three years ago. In fact, he has been visited at his work so many times by former teachers and administrators at his school that he was invited to come back for an alumni award last year. He was a bit taken back by the attention, however, he was able to come up and say a few words in front of the current class. Naturally, I was a proud mother, but I knew what it took to get to that moment.
While his employer has been “understanding” about certain things that my son does that are unique, they have had to find a balance between his words, deeds and other behaviors and the rules of their establishment as well as their expectations. My son’s inability to meet these expectations has resulted in being written up on several occasions and also being suspended twice. The infractions might seem petty when you are hearing about them, but to the business, they are part of what every employee must do in order to remain employed. They have told me on more than one occasion that they have gone above and beyond to understand and try to counsel him. However, I feel like his stagnation in this position will lead him to not pursue another career path and leave him, like many on the autism spectrum, in a lower paid job that will not foster life long independence.
I’m not quite sure that I have an answer for what he’s going through, although I do try. I encourage him to seek out his driver’s license, but his anxiety and worry take hold quite fiercely and he cannot fathom purchasing a car, affording insurance, navigating roads he finds dangerous and filled with distracted drivers and scary situations. While he has been able to interact well with customers at his place of employment, something as simple as making a doctor’s appointment, filling out an employment application for another job that could pay better or contemplating signing up for college courses can be crippling to him. It is difficult for anyone not on the spectrum or familiar with the individual to understand why change does not come.
As a child, if I did something wrong or broke a rule etc, I expected a consequence, or punishment. It may have been being sent to my room, loss of outside privileges, the inability to attend an event or a physical punishment. To this day, I don’t truly recall much about the things I did wrong or how the punishment/consequence helped or didn’t help shape my behavior after. However, I’m not autistic (at least so far I’m pretty sure) and to this day, I haven’t found ONE thing that has truly created lasting change with my son. I’ve done the “take away the electronics” the “make him walk to work”, the “not purchase his favorite snacks” for starters. Sure, they get a reaction and an unpleasant one at that, but there is never lasting change that emerges from these attempts. It didn’t work when he was a child and it doesn’t work now.
What I do know is that if you “push” him hard enough, you will see a meltdown. Many people associate a meltdown with the picture of a toddler hurling themselves to the ground and stomping their feet. Well, yeah, he used to do that too, but now, being over 6′ tall, the meltdowns can be more scary and difficult to deal with. About a month or so ago, there was a discussion that became too much for him and he reacted by punching, and permanently damaging, a door in my home. Every time I walk past it, I have to recall that moment and how upset he was. There is a precise instant when you have to sometimes walk away from these discussions and say, “That is enough for now”. It takes a long time to get to the point when you recognize the signs of that moment arriving in the conversation.
Therapy, medication, patience and understanding go a long way towards helping a child with Autism. What I do NOT know is how to enact lasting change. I wish someone would tell me what to do to help him, because I’m at a loss. I’m tired, no, weary of it all and wonder what will ever happen to him when I’m gone. I’m sure I’m not the first parent, of a child with autism or not, who has wondered this same thing. Being the anxious and over thinking parent that I am, I spend a lot of time worrying about his future and what I can do to make things better. For now, I am stuck and unsure of what to do next. I won’t ever give up on him, but I wish I had more answers.