High Functioning Doesn’t Mean "Normal"

Somehow, I feel I have bought a little bit into the deception that if my son with autism is “high functioning” because he’s able to speak, then all is well and “normal”. For all who do not live with autism, let me just go ahead and tell you that it is wrong to assume if someone’s kid is higher functioning with autism that things aren’t that bad. Do we struggle less because our children can speak? Certainly in the area of communication…  sometimes. Does that mean we don’t also struggle in every other area just as badly, or even worse than others? No. And for the record, no one can ever compare their life with autism to another life with autism. Each is unique. Each faces major challenges in many different ways. Each deals with and copes with those challenges in various ways, none of which are necessarily better or worse than the other.

Without boring you with the details, and really for my own sanity not to repeat every second of our evening, suffice to say that something new emerged tonight that I had not experienced before. Ever.
In Sam’s anger and frustration, he acted out with aggression towards me, which he has never done before. It was not nearly as severe as I know fellow mom friends face often, but it was new to me and scary. He grabbed and pulled at my clothing and my arm at one point, with me prying his hands off of me and trying to walk away and leave him alone for his “break” (aka time-out). Later, angry at his consequence which he chose, he reached up and very intently pulled my hair. It was obvious that everything he was doing was intended to hurt me and he was looking for a reaction. That is more clear now than it was in the moment, but even in the moment, I tried very hard not to react strongly as that only reinforces the behavior.

I feel shocked that he would act like that towards me. I feel scared because he is only 7. What might he do when he gets older? My husband reminded me that he had done something similar to him, hitting him in the face during a therapy session to get his attention (which did not work). He never did it again. It’s possible this is only one incident never to be seen again. It’s possible the same thing will happen again tomorrow or next week. It’s possible it not only will appear again, but will continue to progress and get worse. That is a terrifying thought. What will he do? What will we do? What about his brothers? The “what ifs” are endless.

I am trying hard to make myself NOT dwell on the negative and the what-ifs. I know I need to have a plan in place. It would be helpful to map out things that we see have caused frustration that could lead to this behavior in the future and do all we can to prevent it. However, the point of all of this is: never assume you have autism figured out. I thought that because we have reached this point and have come so far and progressed so much that this would not be our problem. But autism surprises us daily. How could I have possibly thought that I had it all figured out and there would not be any other “issues” to arise? I feel so stupid and so discouraged. I know I shouldn’t feel that way, but I do. I just thought we’d keep going along, dealing with screaming and meltdowns. I just never thought I’d also have to deal with… this.

I am very thankful for friends, who, although I hate that they have already had to walk through this fire, they are able to encourage my heart and help with future how-to scenarios. Maybe that’s why I’m in it now too. It’s coming for others, and I will be their help in the moment of tears. I pray that this is a one-time only incident testing me and testing how far he can go. The solutions aren’t easy and they are confusing since every little thing requires a different way to handle it. I continuously ask myself if I’m doing the right thing. Am I truly helping him? Am I working hard enough? Am I loving him well enough? Am I looking past autism to his heart and still pointing him to Christ his Savior to rescue him? Am I dwelling in pity? Am I trusting God?

Tonight, so many questions. Tomorrow is a new day. May God grant his grace and mercy on us.