Posted by: debstake | September 7, 2008

The Most Frustrating Thing About Autism…..


me-dtd-2006….for me isn’t even the autism itself. What frustrates me the most is the general population and how it views our children. I can’t even begin to count how many times I got the “dirty look” or snide remark about bad parenting skills. If these people only had a clue what we, as families who have a member with autism; live with day-to-day I could guarantee most if not all, would be a lot less judgmental about our kids and their parents.

I have adopted over the past few months an “I don’t give a fuck what you think” attitude about people’s attitudes where my son is concerned. Because, frankly I get tired of trying to explain what autism is. It makes me feel like I am justifying my child’s behavior and existence. My child has as much right to go to Wal-Mart or a restaurant as any neuro-typical child does. I am getting to the point where I plan on purchasing THIS.

Equally, I get frustrated by the neuro-diversity sect who believes that autism is ok. They don’t see this issue as an illness with physical issues. They think that being autistic is ok. Which I wouldn’t have problems with if they were speaking for themselves only, but they don’t, they are trying to sway parents into thinking that as severe as their children may be with all the gastrointestinal issues, the inability of the child’s system to release toxins, the brain inflammation, the liver malfunctions, that it’s ok that they remain in that constant state of pain. I will go to the ends of the earth to help my children. My son has been on bio-medical therapies for over 5 years now. Seeing the improvements that have stemmed from just this one approach convinces me that autism is not only a physical, medical issue but that it is treatable and I believe in many cases REVERSIBLE. I remember not that long ago when JR used to constantly slap his stomach. That was his only self-injurious behavior he had and at the time I thought it was a stim of some kind. After we began treating him for yeast overgrowth in his intestinal tract did the slapping begin to abate. That is when I realized that he was in discomfort from the yeast.

Another group that frustrates me is the behavior folks. You know the ones, they think that the only thing that will work in treating autism is a behavioral approach. Whether it be ABA, TEACCH, CLM or what have you, their approach is the only one that works. Even at JR’s school there are still some who feel their way is the only RIGHT way. I have been a huge supporter of behavior modification and the use of ABA and CLM. However, I am open minded enough to realize that there is more than one way to help our children. I have been convinced for years that you can’t do one without doing the other. However, you MUST begin with the repair and healing of the body, the WHOLE body. A child with autism is not going to understand why they are being asked to do certain things until you lift the “fog” that is surrounding their brains. Any child needs to, and wants to know why they are being directed in a certain way.

Maybe as a mom I am more in tune with my son and there for I can read his non-verbal cues of when things are right and when they are wrong. It takes a little more “mother’s intuition” and paying attention to the little things but I can tell when JR is off. I know how to correct most of these “off” issues and the ones I don’t know how to fix his doctor is just a phone call away.

And even though JR is non-verbal it really isn’t difficult to read his non-verbal cues as he is very animated, loving, quick with a smile and happy. He also understands a great deal from; facial expressions, to tone of voice, and even to some extent, body language. I have always been the type that wears her emotions on her sleeve and I think there is good reason for this. It makes it easier for JR to understand what I am trying to say even when I don’t use words to express myself.

So you see it isn’t the autism that frustrates me, it is society and it’s narrow minded approach to how autism is perceived, treated (or in the case of the neuro-diversity bunch, not treated) and how my parenting skills are judged. Again and as is the norm for me, my issues lie with man’s inhumanity to his fellow man.

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Responses

  1. If you look at the very top of this screen you will see a billboard that was in our area for autism awareness month. That pretty much sums up societies attitude about autism.

    However, in all fairness until this happened to our family I didn’t give it much thought either. And to be perfectly honest, I remember seeing these children in the stores before autism became part of our life and thinking the same thing that people think about us now.

    What goes around comes around. Or if you prefer the biblical reference; “you reap what you sow”.

  2. I would agree there is that lack of desire to learn about the subject. This boils down to self-centeredness – ‘if it doesn’t concern you why bother’ attitude.

    Wish you strength, peace, and calm.

  3. Novice,
    I could handle the ignorance without a problem. I am speaking in this post of rudeness. When JR used to display the “typical” behaviors of autism (melt downs, temper tantrums, inappropriate touching) it wasn’t the looks that bothered me near as much as the lack of desire to learn about what autism is.

    That lack of desire is one reason I started to print off “business” cards and hand them out. I still do this.

    Besides, you can’t turn on the TV, open a newspaper or magazine, even listen to a presidential nomination acceptance speech without hearing about autism. For those truly interested all you have to do is goggle the word. Believe me you will get an education. We as parents of these children have our hands full dealing with our school districts, the medical establishment, the drug cartels (who are responsible for this), and the government who covers it up. Our hands are full.

    I have noticed a very unsettling turn of events though. It seems the more awareness autism gets the less understanding society as a whole is becoming. People do NOT want to be educated. And frankly as a parent who has been walking this walk for 8 years now I am sick and tired of the attitude.

    Society had better realize something pretty quickly; as these children age they WILL become members of the work force, the local gym and the local churches. The days of institutionalizing autistic individuals is over. Society had better adapt to that fact.

  4. Deborah,

    Ignorance causes us to do a lot of unsympathetic things, to harbor a lot of wrong concepts and perceptions and to utter senseless and insensitive statements.

    Dealing with your JR has provided you with tons of knowledge on autism. You will surely not allow such uncalled-for incidents divert you from helping others understand about autism. Continue to help educate us on autism with what you have learnt first hand.

    Spread your compassion for your JR to ignorant people like us.


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