Perhaps my autoimmune disease is acting up again, or my thyroid is out of whack because I am starting to feel chronically tired. It could also be that I need to be “on” from 6 30 am till practically 7 at night. While homeschooling itself isn’t difficult, or taking up huge amounts of time, it is exhausting needing to constantly be a monitor or referee. The girls do play together nicely in their down time, and my son will join them occasionally but most of the time needs assitance and encouragement. He does play Wii, computer games and watch tv but other than that there is very little he is interested in. He will study but complains he is tired, and frankly, it is obvious that some days it is hard. He is clever mashaa Allah but simply not motivated in the same way to learn and play as his siblings or NT children. We typically use electronic breaks in between tasks to encourage him to do his less preferred activities. I hope in time he will find learning and playing easier or at least put up less of a fight.
I have read many discussions regarding a form of therapy that is frowned upon, such as ABA. As a therapist in another life, I do remember my first experience with Applied Behavior Analysis. We were not allowed to show emotion at all, except when the child gave a correct response, we would give high five and cheers, but it was not allowed to hug and kiss the child for example. It was very clinical, and much like the complaints that some autistic people have reported, likely a cause for PTSD. On the other hand, I have worked in other places, that applied basic principles of ABA but in a more child friendly and less clinical feeling environment. However, there is still the use of aversives for some children who, as an example, hair pull. We would apply foul tasting syrups so the child would pair the action with the bad taste, and hopefully stop doing it. It is somewhat the same idea as applying certain nail gels to your nails to prevent you from nail biting. This place I worked at did not use things such as electric shocks, but I have heard of that happening. So, you can see how ABA might get a bad name. Also, there is a lot of emphasis on behaving normally and “less autistic,” in the case that he might have stims like hand flapping etc. We would frequently say “quiet hands” and put his hands down. Now, I have learned from watching grown autistics describe how they need to stim to self regulate. I understand this to some degree, but also when stims prevent a child from learning perhaps we have to try to give them alternatives. I had a child that constantly jumped out of his chair and flapped his arms. After sometime working with him, he sat very nicely. I believe he needed other things to do with his hands and body. If he was left that way, it is possible he would not be able to learn, just as a child might constantly run away from work. So, I can see how we should try to redirect children but not be anal about “quiet hands”. I guess my point is that, as far as I can see, ABA has many good and proven methods to help behavioral issues that might arise. I do not really see many other therapies that help children with difficult behaviors. But I dislike intense ABA programs, as it does feel like brain washing and making the child appear more “normal” and does not take into consideration other things that might help such as occupational and speech therapies. The ABA therapist is also primarily responsible for those but with the same intense discrete trial teaching methods. Children need moderation, they need outlets, they need balance. ABA is like a boot camp to change him completely as quickly as possible.
As a parent of a high functioning child, I admit I use methods of ABA, but I do not do discrete trial teaching. We reward good behavor and I consult a BcABA on problem behaviors. For us, it is his hitting and saying negative things. Everything is too hard and bad, and he always responds first by hitting when he is overwhelmed. If he is approaching melt down, he will also hit himself or break things. These things are maladaptive and unacceptable, and I have tried everything to help him. But in the end, it decreased primarily when we consulted with the therapist and started a Manding program. The idea is that although he has a great vocabulary he doesn’t know how to express his feelings and needs appropriately. His reaction to hit is quicker than his brain to think of appropriate responses and mands. Also, to decrease his negative language (always calling us names when we say no to anything), was mostly only reduced by completely ignoring the statements and rewarding him when he expresses himself more appropriately. I fell into a trap of constantly engaging him whenever he wanted to complain and try to give him rational explanations which made it worse. The therapist’s advice helps me to see that what I do can change what he does. I consult with her only 1 time per week and she also works with the twins together on social and turn taking games and making requests from each other since this is a huge problem in our house. So, I believe ABA has great ideas and programs, but perhaps the implementation in the schools is incorrect.
There is a huge divide between some parents wanting their children to be normal and autistics who find this offensive. As a parent, I do not have any desire for any of my children to fit in or be “normal”. I believe his autism is like a super power, that he may be able to come up with new ideas or solutions in society that may come about simply because his brain is wired differently. To me, this is something wonderful and amazing. However, he does have many struggles that we cannot deny. And this is the part most of us want to change, or help. I understand him often, how he feels, as I feel the same way sometimes, to a lesser degree. I am not sure if it is because I am different or because of my experiences, but I am blessed that I can relate to him at times, and see his struggles and as a team, we are all trying to be proactive and work together.
Another issue I have seen discussed between NT parents and the autistic community is the use of functioning levels in an autism diagnosis. It appears that the main argument is trying to label something, namely a level of disability, that is often subjective. For example, minimizing the struggle that so called high functioning autistics might have. But, from working with a hundred children with “classical” autism, to me, there is a difference between them and my son. However, I am not able to tell how the children I have worked with feel, perhaps they think and feel like my son but are overwhelmed inside their bodies, who knows. But most of those children have difficulties reaching programs in pre academic levels, and that does seem to show they are lower functioning. My son, is easily able to keep up with his twin or even surpass her, except that he has severe issues in following directions or doing things he finds unmotivating. I believe he can have a family of his own, and a job, and complete college, whereas most of the children I worked with will need support throughout their lives. I don’t see how we can’t try to differentiate between the two, but then again, perhaps it will be better to just say autism. In the beginning it was hard for me to say autistic, because of other people really. If I tell them he has autism, they disagree or argue with me. But clearly, when you work with him for sometime and see the intricate layers of his personality and abilities, he clearly is autistic. So now that is what I say, and I can understand why the autistic community might be fighting for this change. It can increase awareness that autism is in fact a spectrum, but unfortunately it will take quite some time for the general public to understand.
One last thing that stays in my mind, regarding this idea that autism is a spectrum relates to trying to understand where autism begins exactly. I, for example, dislike eye contact, social interactions, find social responsibilities extremely taxing, have minor sensory issues, and can get overwhelmed to the point of a breakdown. I havent been able to hold a job for more than a year because of these issues, and yet no one would say I have autism. But, perhaps something in my genes led to his issues, or that combined with something else let to it. At any rate, the point is, what makes someone labelled as autistic and another not. Perhaps we all have some capacity to it, depending on circumstances in our life? Or perhaps the increased push to normalize all people and fit them into boxes, has generated the divide? I personally don’t believe that so-called “normal” society is really normal at all. Even for “normal” people. Whatever that means. I never fit into school, and do not want it for my children, except as a temporary thing. Similarly, this idea we have to follow certain paths before marriage and kids. Why not get married young and have kids young for example? This drive to force us into moulds is exhausting and damaging to all people, really. I support accepting people with autism, but moreso, I believe we need to stop believing in this falacy of “normal”. I know that is unrealistic to some degree, so instead I try to remember and instill in all my kids, to be the best we can be, to keep learning and growing, to help others and be useful in life, however that is, for them. To take care of and support each other in all periods, and guide others to do the same. Be true, as a Muslim, to care less about what others think, and keep marching forth in light and service. Most of it is a distraction anyway, so just keep moving and developing. Reardless. That, in itself, is a challenge sure, but it is the important one. Not being any kind of normal and definitely not fitting in and following the crowd. That to me, is death. If my kids do that, then I believe they will be successful in shaa Allah, all of them. And that is what matters to me.