Outrage and Autism

It is gut wrenching to watch a child with little to no understanding of social cues go up to a group of kids and try to ask "will you play with me?" and to know that over 90% of the time, they will say no- and not nicely. Kids with ASD are often excluded. It is not the fault of the neurotypical children, kids are like that... the concern really is WHY do their parents, when standing right there, not say a word? If the children are not taught acceptance, how can they learn? How can kids with ASD learn to play with Neurotypical kids if they never make it past the first question?

Oddly though, many kids with ASD are accepted as friends by much younger children or children who are very much older.

Parents of kids with ASD sometimes give up encouraging their child to play with same aged peers because it is just too sad to bear.
I wish that more parents of neurotypical kids would sit down and really talk with them about acceptance. The trouble with ASD is that it is not always visually obvious, there is just "something different" upon first meeting. If we could teach acceptance for everyone, not just those who have physical difference, but also those with invisible challenges, different ideology and different interests the world in general would be a better place.

If your child is excluded from play, don't give up, focus on that 10% (or less). Maybe you could try different age groups. Cutie is 6 years old and his new best friend is the 12 year old neighbor of a kid who will not play with him- this young man has accepted him, and provides guidance and defends him against the teasing of the other children. This young man has also taken time from his week to teach Cutie rules of games that no-one else has been able to teach him and has introduced a few 10 year olds to him! There are more kids like this out there, don't give up! If you find one, be sure to do something nice for them too!

Every now and then something pops up on the news about a teacher using duct tape to secure a behavioral child to their chair, physical restraint resulting in the suffocation of a child with special needs or teachers hitting a child with special needs. MOST schools would never endorse this type of punishment. What is really the problem in these situations? Teachers don't choose their profession for the fame or fortune, nor do they choose it for power. Teachers generally choose their profession out of a love of educating, guiding and shaping young minds and hope for a brighter future. Is it a few bad apples? Maybe, but I think there is more to it than that.

If a teacher is going to "snap" there are usually warning signs. These signs were likely ignored, not from a lack of caring, but a lack of education and understanding within the education system itself. Many schools can not offer full time Special Ed support in a mainstream classroom. Sometimes, the mainstream teacher is not prepared for the type of disabilities they will encounter. Classrooms are often crowded, the mainstream teacher may not have sufficient training, occasionally, you will find some that do not even acknowledge ASD as anything other than children behaving badly. Perhaps the only resources that the teacher was able to find were articles from the 1940's, when these scenarios were not seen as "bad".

I absolutely do not endorse or support the actions of these teachers who are accused of mistreating their students, I do however have to question WHY it happened in the first place before rushing to judgement. Some teachers that I have spoken to in the past few years have told me that they have been instructed (by the principal or school board)to physically restrain and remove (without adequate training such as CPI) "disruptive" children (in the Special Education program) from their Inclusion classrooms and place them in isolation rooms for UP TO 3 hours. The theory was that if the mainstream kids saw continued disruptive behavior, they would begin mimicking it regularly. One of the Special Education teachers I spoke to, was in tears, she never complied with that order. Children were VERY receptive to her methods, disruption was momentary and she was able to calm them (kindly). She was harassed repeatedly by the school board and eventually lost her job for refusing to treat children like animals. I witnessed her methods first hand, she was amazing, the closed mindedness and ignorance of the school board was an insult to educators everywhere.

When we were preparing to move, I called every school within a 50 mile radius of where my husband is working. I asked a lot of questions about how they handle children with MILD behavioral problems. Their answers surprised me. Not only was I surprised by their policies, but by the fact that most of the schools seemed to be quite proud of these archaic techniques. When we bought our house, the decision was based SOLELY on the local school.

Imagine being told by a doctor that your child who is 12 months old "has Autism. Because you are one of the lucky few to catch it so incredibly early, an Early Intervention Program with intense 40 hour per week therapy will be extremely effective... there is a HUGE chance your child will speak and even be able to pass as "somewhat normal" as an adult....but only if you start right now.... oh, but your insurance company denied the claim."

Four weeks later you are denied the appeal, another four weeks and you are denied again. Can't qualify for medicaid, you make $300 a month too much. Can't buy other insurance, ASD is a pre- existing condition. You continue the fight, for 8 months.

Wonder why people get mad at these companies? Especially when it is even outlined as a covered service in the original policy, they somehow find a way.

With healthcare laws evolving, this could someday be a problem of the past, for now we are kind of in limbo... at least Children can't be denied coverage for pre-existing conditions... but how much must they pay? will that law be changed because of all of the other laws that passed with it in the Healthcare reform bill?

At what point do they ever say " A Human life is more important than profit?"

Ever see a kid throw a fit in a store? Did you walk up to the parent and tell them that it is because the parent "spoils the child they behave this way?" I really hope that wasn't you! You would be amazed by the unsolicited, negative comments from strangers and sometimes even relatives ASD can generate. If you do not have a child with special needs, you probably can't grasp how extremely helpful it is if you step in and speak up when you over hear someone doing that to us. Even simply, asking the person if they knew a register over there is open, anything to make it stop.

I get angry for my friend, she is constantly faced with a borage of "helpful insight" about her child's behavior. The people making the comments often throw in snide little comments about his dishevelled appearance (which occurs when he is thrashing around on the floor). Polite questions are not so bad, "Is he OK" kind of things, "do you need help?" etc. But please, enough of the judgmental "you are a bad parent" comments. and please, if we say our child is autistic, for the love of apple juice, don't tell us that you, who have seen him for all of 2 minutes can more accurately diagnose him than three multidisciplinary teams consisting of roughly 40 specialists!

Did you know that this problem has actually become so widespread that parents are making and carrying around business cards that say "my child has autism, they sometimes act up in public when they are overwhelmed, please let us be, it will be over shortly!"

There are now companies printing up ASD cards just for this...

Science is complicated. Nothing is quick, ASD is a particularly challenging disorder to research. There have been huge advances made in the past decade, but that is just not enough for parents who need to know why this happened. Be assured that if you are angry about this.... your answers will come. Scientists around the world are working feverishly to find a cause, and potentially someday (probably not soon) a cure. New treatments are in trial phase 3 in Europe and the US right now. One such treatment shows great promise of improving or potentially eliminating most of the symptoms- it is not a cure as it is a medication that would be lifelong, however showing great promise is NOT the same as having proven efficacy.

There has been much hostile debate over the vaccine controversy- I have never bought into that one myself but understand the passion of those who do. A majority of research of the cause of ASD has been spent on that one particular topic for the past few years, now it the attention is being spread more broadly, so that individual companies are checking more possibilities- thereby increasing the statistical likelihood of finding the cause.