This statement is true for both Hunter and our family. Autism isn't a "you get what you get" diagnosis. You can't just get the diagnosis, learn and understand the issues and treat the struggles expecting them to be better with therapy because every new day brings new discoveries and experiences and those lead to new challanges. You also can't assume the diagnosis of Autism means skills can't be learned. Not all challanges are bad, many are good and easily overcome and accomplished. Sadly though some are not so easy to treat, deal with or understand, some will test your every ability. There is no such thing as a Learning Curve with Autism, it's Learning Hills and Valleys.
When Hunter goes through a "growth spurt", (I'm not just referencing his physical growth, I am also referring to growth in his speech and language developement or sensory processing tollerance etc etc), we always notice one area tends to suffer as a result of it. For example: If he developes in his expressive language skills we often see him struggle more with motor planning or his stimming will increase or in some cases a new stim will emerge.
About a month or so ago we began to notice that Hunter would take his hands and rub his cheeks over and over and over. He did this to calm down or express excitement. Most often he used one hand but occassionally used both. He might even be seen tapping or gently slapping his own cheek too. Although carried out in slightly different ways each time, it was done for the same purpose. This went on for about 3 weeks or so. I spoke to his therapy teacher about it and we discussed what else may be happening in his developement to bring this on. After reviewing all his recent accomplishments we both concluded that he was showing some progress in both sensory processing and language. This new stim was a coping stim he had created to help himself get through this lastest advancement. I can't recall when exactly he stopped doing it but eventually he did.
You honestly get so used to seeing these stimming behaviors, you really don't notice them as much as an outsider looking in does, esp when they become a part of your daily life.
The lastest stim to emerge is an oral stim. I hope to get a video uploaded showing it since it's hard to describe. It is a cross between a throat clearling and a gasping for air kind of sound. He will repeat it over and over as if he had the hiccups. This one is more pronounced and many have noticed it. When it gets to a point where it becomes disruptive it's time to intervene and we are quickly approaching that point. Not sure what triggered this new stim so I'll have to put some thought to what areas he is progressing in or what may be the reason for it. We are going on about 2 weeks now with this one and I see it happening more and more, not less and less and thats not a good thing.
Many see him and express how wonderful he is doing and how they can't tell he is autistic. I would have to say that one of the biggest misconceptions with Autism and therapy is that people assume that if an issue is treated successfully and they've learned the skill to cope that it is no longer an issue and they kind of "out grow it" or "get over it". I completely agree that Hunter is doing amazingly well, I am SO very proud of how well he is doing!! But also stand firm in my belief that sometimes others inability to see it is because they don't recongize the tiny things he does that clearly reveal it. The problem is still there but not as obvious, it doesn't just go away, he has just learned to cope and over come it, most of the time. He has had several motor planning meltdowns lately and some onlookers have said "oh he is tired" or "he is just being naughty". Well maybe he is, maybe he isn't. Either way, he is trying to cope and this time it isn't working for him and it lead to a melt down. He can most definately be acting out as any toddler would be doing which is typical for his age however his Autism makes adapting, coping and redirecting much harder. When he's not successful, one shouldn't assume he is just misbehaving or in control of his actions and just needs to stop.
Has he been tired at times? Sure but meltdowns aren't just because he was tired or was misbehaving. Having Autism doesn't mean you only have behaviors a typical child doesn't have, it also means that some age appropriate behaviors will be taken to a new level and harder to deal with. It can often be as simple as instead of him taking 30 mintues to calm and be redirected, he may take an hour or more to calm or never be able to redirect and reamin "stuck" on his agenda. And being "stuck" isn't just is choice to be defiant. I used to try to explain it when it occured, now I don't bother. Sometimes my words help, other times they fall on deaf ears so I've found it isnt worth it sometimes. We had this happen a couple weeks ago, I said to my husband as we were crossing in the hall with a crying Hunter, "motor planning melt down", he said "yeah I know". Many around us saw it as one thing, but we knew what it really was. And as long as we knew I guess that's all that really mattered....
I've said a few times recently that had Hunter not gotten his diagnosis by now I would have begun to question some obvious red flags I was seeing.
With therapy a child on the spectrum can learn the skills they need to be successful but there will always be new challanges, good days and bad days. Autism doesn't go away, it is just managed. There will always be the chance in new stims emerging or days they regress and most of the time its ok. You just face them when they occur and do what you can to cope and work through it. It isnt easy but you do it because you HAVE to.
When you meet another parent who has a child on the spectrum you both may find great comfort in sharing experiences, it helps to not feel alone. The unspoken bond you get, that is more healing then any word shared, is the knowing that they GET IT, they UNDERSTAND your pain and frustration. They have walked in shoes like yours and climbed your hills and valleys...
