Joking aside, I really love what you had to say about the guilt and then about letting go of the guilt. Letting go of the guilt seems to open the way for realization. A lot of the “therapies” out there do tend to set autistic people up for failure which leads to frustration which ultimately leads to unpleasant behaviour.

Best of all was “we do have to realize our kids aren’t broken copies of normal. They are different!!!” May I use this comment in my “What Parents Need to Know About Autism” presentation? That says exactly what I want to say to the parents who will be attending.

Look at the story of Helen Keller. Until she found a key to the minds of others, her behavior was out of control because the world made no sense to her.. It was nothing her parents did that made it that way. I think we are in a time of tremendous growth in understanding of autism. but we do have to realize our kids aren’t broken copies of normal. They are different!!!

I think I might have been misintepreted. My message was not intended as an attack. I’m doing my speech later this week, so I’m kind of stuck on the “what folks need to know about the history of autism in science and the experience of autism from the inside”. My apologies if I came across the right way. It’s a sensitive topic.

You said: “We always say this in my house. But it’s not just about NOT talking negatively or bemoaning autism out loud. Non acceptance is insidious. It is practiced every day even by the best of us.”

I know that you’re not talking negatively or bemoaning autism. Unfortunately, I have met quite a few parents in my travels online and in person who do express the negative sentiments and that was who I was referring to. One constantly posts to my blog about how I must be referring to “other” autistic people since one of this person’s children is beyond hope and, let’s call a spade a spade… a burden to that particular family. This person doesn’t just do this on my blog but on others as well. It’s quite disheartening because I wonder what messages this parent is projecting directly and indirectly at the child in question…

You are absolutely right in that it is not just about saying the words, but the practice as well. Actions and implied emotions are picked up as well.

From what I have seen in TAAP and your blogs is that you have your ups and downs as is to be expected with any child, but ultimately, your messages are practical, constructive and positive. You try to understand, try to accept and, most importantly, try your best to help Adam accept himself and deal with his differences. That is a the mark of an excellent parent, in my opinion.

It won’t always be a walk in the park, as you know, but you have committed to doing the best you can to make the experience as positive as possible…who could ask for anything more?

You’re doing an awesome job as a mum and advocate. If only more of the autism advocates could take on the same positive, yet realistic outlook, we might get somewhere. :^)

The scars of Bettleheim were still as fresh as they were decades ago.

Sometimes I think that there are certain aberrant thought processes that just won’t ever totally go away. Besides “The Refrigerator Mother”, I would also include “Vaccines Cause Autism”, and “Eugenics”.

Joe

You said: “Little eyes are always watching. Little ears are always listening. Little minds are always making sense of what is received. Little souls are forging their own destinies based on what they observe, hear, live and feel.”

We always say this in my house. But it’s not just about NOT talking negatively or bemoaning autism out loud. Non acceptance is insidious. It is practiced every day even by the best of us. I cannot say what true acceptance looks like in its perfect form. I can only speak from one experience at a time (or one discrimination at a time), and it also looks like the person who is always in the face of an autistic person, constant worry (sometimes that’s even me — especially now when Adam is in so much distress from the move and I too am feeling more vulnerable and “sensitive” to him than normal), trying to get the child into the school that’s “going to make them better.”

We don’t just have to watch our words, we have to analyze our very real and natural thoughts because this is how we were all brought up to think.

2. How big, exactly, is the effect? Is it any bigger than the effect of interacting with neurotypical children? If you have, say, only ~5% more progress with speech among one group, then most likely, this “sensitivity” they’re talking about (however they define it) doesn’t make the difference between being verbal and non-verbal; it would be more like the difference between a fifty-word vocabulary and a fifty-five-word vocabulary.

Children learn better in good environments. We know that. A “refrigerator mother” won’t do a neurotypical child any good, either. It makes sense to determine the optimum environment for raising an autistic child. We just hope this doesn’t go in the direction of blaming parents for somehow not doing enough.

Bruno Bettelheim, holocaust survivor who spent time in various concentration camps during the war, knew intimately the behaviour of people in the deepest distress. Every day he saw it in the actions and the eyes of fellow inmates. He eventually would see these very same behaviours in autistic children.

How is it that these kids behaved the same way as prisoners in concentration camps? How was it that these children exhibited the same behaviour as those suffering pain, torture, uncertainty and an everyday fear for their lives but were not actually in a concentration camp or other situation?

This is where Bettelheim took a wrong turn: he blamed the parents based on observations made by Kanner’s studies which stated that the parents and families of the “autistic” children exhibited similar obsessive behaviours and were quite brilliant in mind. Kanner was likely alluding to a possible genetic source since he also said that autistic children were born the way they were, not made. He was simply noting familial similarities.

How could children being raised in relative comfort and normality be exhibiting the behaviours of the extremely distressed? Bettelheim looked at the only constant in a child’s life: caregivers; usually parents.

What Bettelheim failed to see is that the distress being exhibited may be coming from another source: inside the child’s own body and mind. Most notably the differences in perception due to sensory differences, intolerances to certain foods or environments, a constantly racing mind that is hard to slow down and a completely different nervous system. It adds up and is a constant source of stress for some, whether they realize it or not. Many of us have learned to cope with it… in fact, many behaviours are exhibited for that reason: to quiet a body and mind that work on different levels than the average person.

That said, I do believe parents play a big role. Their emotions are readily felt by their autistic children. Their reactions are constantly being observed and noted by their autistic children. Their autistic children do base a lot of their self image on how authorities such as parents, teachers, other caregivers and eventually media and general society view them and treat them.

If a parent is constantly bemoaning their burdensome child who will amount to nothing, that attitude will be picked up.

If a parent really does try to help with the difficulties, tries to help build a child’s self esteem, tries to encourage a child to live the best life they can for themselves, that too will be picked up.

The messages, both direct and indirect, delivered by parents and key people in a child’s life are always picked up. Even by autistic children, which many seem to forget.

Little eyes are always watching. Little ears are always listening. Little minds are always making sense of what is received. Little souls are forging their own destinies based on what they observe, hear, live and feel.

Cold parenting is not always a problem. I found that the less emotion my parents exhibited, the easier it was for me. That could be why I always related better to my father. He was not very emotional unless he absolutely had to be,. He got through to me better. To be honest, the less emotional parent might actually be a benefit, not a detriment to an autistic child who already has a hard time processing the emotions of those around him.

Just my thoughts.