Monday, October 20, 2008

Follow up on Feeling....

Thank you everyone for your comments, and apologies for not responding individually. This post generated a significantly larger response than I'm accustomed to, so I wasn't prepared to propel the dialog.

There are themes that seem to keep coming up that I think need to be addressed. I'm referring to the comparison to ADD, ideas about medication, and insinuations of lazy parenting.

The first step in treating a child with Autism is not to medicate them. Nor is it the 2nd, 3rd, 4th, 5th, 6th. etc...Autism is not treated with medicine. There is no known "Autism drug." There is no Autism equivalent of Ritalin.

My son has never taken any medications. No one has ever suggested that he take any medications. I would sooner spend a weekend with George W. Bush and Michael Savage than see my son put on medication.

I have worked with dozens of people with Autism over the years. I have yet to meet one who was on any medication for the purpose of combating autism. Some are on medications to prevent seizures, as seizure disorder can sometimes accompany Autism. Some are on anti-depressants, because they seem to have fewer instances of aggression when taking these. Some might take meds to help them sleep, as Autism can sometimes cause a person to go without sleep for weeks, to where it becomes a serious health risk. None are on medications to make them "less autistic."

Autism and medication simply do not go hand in hand in anyone's mind who has any first hand knowledge of Autism.

Therefore, claims that people seek out Autism diagnoses out of lazy parenting are nothing if not tragically comical. Any parent who tries to get his or her child branded Autistic out of laziness has a unique and brutal form of comeuppance in store.

Upon receiving a diagnosis of Autism, the parent is promptly assigned the task of getting their child into the system of their local Division of Developmental Disabilities, of working with the school system to make their child eligible for special education services, then negotiating an Individualized Educational Program (IEP) and locating a classroom suiting their child's needs. He or she can then move on to the process of researching all the fine print of their own insurance policy, and then the finer print of dozens of other insurance companies, searching to see if his or her child's therapy needs will be covered.

Upon realizing that they won't, the parent can then begin researching and networking online with other parents as to where in the country or the world they might be able to move where there will be some governmental support for such therapies.

Upon realizing that this place does not exist, the parent can then begin paying out of pocket for extensive therapies - speech, occupational, physical, behavioral, etc. This entails lots of research, phone calls, and visits. Once a therapist is found and wait lists are waited through, the parent is then free to drive their child to random places in the general vicinity of where they live, before or after school to go through the repetitive, often mundane rituals required to improve the cognitive functioning of a child with Autism.

The lazy parent is then free to work second jobs in order to pay for all these therapies.

The pie in the sky for parents of children with Autism is Applied Behavioral Analysis (ABA) therapy. This is the therapy that supposedly brings about the greatest advancement for people with Autism. This treatment does not involve medication, nor does it allow for laziness.

The therapy is intensive, often 30 hours/week. It involves breaking down each task into minute steps. Through exhaustive repetition, combined with consistent encouragement and reward for each proper step the child performs, the child can eventually learn to do simple tasks. Simple tasks that previously had seemed impossible.

And none of these therapies involve the therapist doing all the work while the lazy parent convalesces. The therapists merely employ strategies and offer an intensive refresher each time they see the child. These strategies are then placed into the lap of the parent and it is well expected that they work on them every waking moment. Therefore, over the course of a typical week, child, parent, and therapist all engage in an ongoing process requiring utmost patience and diligence.

If you stare down a parent of a child with Autism and claim they are lazy, I would encourage you to then go to a zoo, stare down a giraffe, and accuse the giraffe of having no neck. Whether you genuinely believe the giraffe has no neck, or if you simply aim to antagonize the giraffe with your outrageous claims, I can guarantee you will get the same result: the giraffe will continue doing his or her work, pausing only momentarily to give you that inimitable, quizzical, giraffe look of puzzlement.

I never want to cast aspersions or hurt feelings, but if you are someone who knows little to nothing about Autism, and your aim is to hurl insults, I urge you to remain silent on the subject. There is a time for speaking and a time for listening. If you fall into this camp, your time for the latter is approximately now.

Thank you all again...


Miss Dennis said...

Your writing is inspiring. Our blogs have a lot in common. Best of luck, love and education for Sharky! I recently had the opportunity to write for the NY Times about my experiences working with children with autism!

My future stories will be here:

I will be visiting your blog regularly.

Danger Panda said...

Very good to see you back! I'm anxiously awaiting further news regarding the school placement and the investigation.

ted said...

thanks so much Danger Panda and Miss Dennis. I'm sorry I'm so sporadic in my posts. But comments such as yours are what motivates me to write feel free to nag!