I learned some moves…

I want to spend some time on something that doesn’t get a lot of attention in the world. Aggression in Autism.

I remember early on after Z’s diagnosis, I attended a support group. There were only 6 of us and I was hoping to find some kindred spirits on this path as a special needs mama. Once we got started, all of the moms began talking about their latest experience with aggression in their child. One talked about how she had hid in her closet for an hour just waiting her child out. Another showed the severe bites she had received that week from her child. One talked about how the siblings knew to run to their room for their safety. Another about a broken TV, door, window… I sat there in a bit of shock and horror because Z was so sweet at that time.

I hate to admit that I never returned after that first session. I thought I had nothing in common with these mamas. The world of Autism seemed so large and diverse and I thought I just needed to find the moms like me. Little did I know I probably could have learned quite a bit from this group.

Instead, I walked away saying “Well, at least my kid isn’t like that!”

We went through several more years of this ignorance. I saw many examples of aggression in Autism around us and always thanked my lucky stars that Z didn’t do those things.

I can’t say when things started to change. It started with a little yelling here, some throwing objects there. It advanced to self-injurious behavior (SIB for short). The SIB behaviors started with pressing his chin on people’s arms and advanced to punching his own chin. Most of these behaviors occurred during a meltdown. They seemed predictable and we thought we could limit them if we could manage the meltdowns.

While we remained in our ignorance of what our future may bring, things continued to advance. The SIB became a way for Z to cope not just with an extreme meltdown but also with his anxiety. He would pick at his skin over and over until it opened a wound. That would scab up eventually and then he would pick that off and create a more serious wound. He was covered in Band-Aids that he would simply rip off the second you left the room. But, it still seemed manageable if we could only keep the meltdowns at a minimum and lessen his anxiety.

At some point, his moods started swinging. Not too fast, just a leisurely swing. He would spend an entire day upset. Whining and “complaining” all day. Nothing would fix it. Eventually we learned if we tried too hard to change his mood then we would push him into a meltdown. So we would give him his space, let him be a “teenager”. Roll our eyes and walk away. If we could just manage the meltdowns, lessen the anxiety and ignore the moods we would be fine.

And then we looked around one day and realized where we were. Hard days became the norm. School started sending him home. We stopped going out in the world and cancelled last minute more times than we would like to admit. His aggression had become the center of our lives before we even knew it. Little things would set him off. We walked around on egg shells expecting a blow-up at every turn of the day. For the first time, it wasn’t simply “managing” these things.

So as we do with everything, we tried to jump ahead of it. I reached out to a few organizations to see if they would offer any training on working with this highly aggressive behavior. You know what I was told? No. These companies did not want to be responsible for teaching parents how to abuse their children. Yes, that is exactly what I was told by a reputable organization a few years ago. Yet again the system failed us in supporting not only Z’s needs but our needs as parents.

There is no “therapy” for parents of Autism. Sure there are the support groups that parents themselves have put together. But far too often those simply become a venting arena. Don’t get me wrong, some days that is all you need. Just to offload and know you are not alone. There is a type of healing that comes from that. But what we are missing is true support for parents that have gone years living closely with this behavior.

Ever been around someone who is angry all the time? Have that friend or family member that simply complains all the time? What do you do? Most likely you limit how much time you spend with that person. Maybe you walk away entirely “for your own health and well being”. But what if this was your own child? And not just your child that can handle things on their own. That maybe stays in their room and you have minimal contact. We’re talking about a child that you have to support throughout the day. You don’t have a choice. So day in and day out you are forced to be a part of the negativity. You walk on those egg shells like your life depends on it because it really does. There is a type of PTSD that parents like us get. But since this is rarely talked about (out of embarrassment of the parents) or even acknowledged by the “experts” it just doesn’t exist.

So here we are at age 13, puberty in full force. The aggression has turned very violent and sporadic. We rarely know the true cause and he can’t explain it to us. He is very tall and extremely strong. The SIBs cause bruises on himself and he has started attacking others. I have sported my own bruises, been dragged across my floor trying to stop him, clung helplessly to his back while he tried shaking me off. He is destructive to our home and is just unreachable during a meltdown. For the first time, we have had conversations about group homes and inpatient care as we don’t know if he will be able to come out of this or not. If we can handle it…

But I will say the world is improving. Recently, one of the organizations offered a class on managing behaviors in puberty. Bingo! I thought, here we go. They are finally going to show us how to stop these behaviors and get our lives back. But we have no childcare so only one of us could go. We decided I needed more help since I am so much smaller than him now and can’t control him. So I go and was a bit underwhelmed. Over the course of 6 hours, we were told that there is no magic formula to all of this. He is not being rational during these times and is in Fight or Flight mode (thus the superhuman strength). Our job throughout it is to “respond” to him the right way depending on the stage he is in. We can’t take what he is doing personally and need to support him even more during these times. Then, for the last hour we were quickly taught some moves. How to break away if they grab our wrists, grab us from behind, pull our hair, bite us. And we learned a hold that we could do if all else fails. But it needs two people and the reality is there is usually only one person around during these times.

I wouldn’t say it wasn’t helpful because everything helps in its own way. I would say it was a huge step from a few years ago when they just turned a blind eye to what was happening in the homes. But we have a long ways to go. Part of the “plan” should involve how to support the parents through classes, therapy, medication. There should be “check-ins” on a parent’s well being and some way to give the parent a break. I know many of us do not have anyone that could take care of our child for even a few hours due to the behaviors. Most “day” programs won’t take someone if they are violent. Schools start looking for alternative education plans (homeschool, etc). Group homes won’t accept someone if they have behaviors. Parents like us have nowhere to turn and are hanging on by a thread on most days. We are drained from constant negativity in our lives. We fear for our child’s safety in the real world should these behaviors arise as most often the police would be called and it would not go well.

So now you know the deep dark secret of Autism. It is not all “savants” and “super powers”. It is not always a fairytale ending. Special diets and medication don’t always cure this. Some people with Autism struggle every day of their lives. And the people that are there to support them are also struggling. It is a recipe for disaster as has been proven in many cases. Things need to change. Insurance needs to acknowledge the caretakers. People need to understand that Autism in the family does not give parents superhuman powers. We are just like all of you but we don’t have the luxury of walking away from the negativity. We simply hold onto that inner love and have endless hope that things will get better.

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