Autism and “The Cure”

So, a friend put me in touch with one of her friends whose little guy was recently diagnosed with Autism. Great! I love sharing the information I’ve learned. Happy to help. Happy to teach. Happy to meet new people.

Only problem… more than once, ignorance has reared its ugly head on this person’s social networking page and it has given me very sour stomach issues.

Today was one of these days…. today someone said to this woman.. Hey look at this website I found while poking around the aforementioned social networking site.

I was hoping to attach the logo that offended me so,  but it was built as such that white on white can’t be seen so let me tell you what it says:

T.A.C.A

Talk About CURING Autism

I was immediately PISSED OFF.

I was immediately sick to my stomach.

I couldn’t decide if I would share the site her or not because it goes against EVERY fiber of my being – but then I figured why not talk about WHY this angers me so much.

Well for starters… There is no CURE for autism. Period. PERIOD.

My son has had INCREDIBLE strides in his ability to manage his autism and his ADHD but he is not CURED by any stretch of ANY imagination. Autism is neurological disorder. A disorder is not anything that can be cured. It is something that will live on forever and how you learn to handle the level in which the disorder effects YOU is called MANAGEMENT. It is not called a CURE.

Neuromusculatory Disorder. Could you ever, would you EVER tell a person with diseases of the peripheral nerves that cause weakness, sensory loss and pain in the extremities that they are cured if the pain wasn’t so bad, today?

A child with Aerodigestive Disorder.  This disorder is in children who have complex upper airway, pulmonary, upper gastrointestinal (GI) tract, sleep and feeding disorders. Care is coordinated across a range of pediatric specialties and subspecialties, including pulmonology, otorhinolaryngology, gastroenterology, neurology and sleep medicine. A dedicated pediatrician serves as medical home and interacts with a child’s primary care provider; nurse practitioners work closely with physicians and families to ensure coordinated care.

Disorders that require coordinated care.. can you imagine… Could you ever, would you EVER tell them they are cured if you found a way with the coordinated care to manage the situation?

OF COURSE NOT…. DUH.

People of the world.. KNOCK IT OFF… Autism can not be CURED. Shoot for many… even managing it is an incapable act.

I would LOVE to see someone in my lifetime figure out what causes it and oh I dunno…. STOP THAT….  but wanna know what…. My money is on the kid with Autism… I bet they’ll be the one to do it… I just pray I am around long enough to see it.

However… In the meantime.. there are people out there like the woman who founded T.A.C.A who by her own admission says THIS on her site – and I QUOTE –

Where is my son Jeff now? He is a teenager at a typical high school learning same curriculum as his typical peers with a great grade point average. He still has a part-time aide. He talks, makes jokes, gives out hugs, plays on the high school golf team, socializes with typical friends, and is an active member of the society with a bright future. He also happens to be the sweetest, kindest person I know and is practically always smiling. That is a far cry from his early diagnosis and the initial prognosis for his future.

TACA’s goal is to provide education, support, and information to parents to help their children diagnosed with autism be the very best they can be, with the hope of recovery.

He still has a part-time aide (coordinated care) and yet wants to give hope for RECOVERY (recovery means there was a cure, a cure means he no longer needs coordinated care, the disorder is all gone never to be heard of again).

Well my darling. Ms. Lisa Ackerman, founder or TACA…. there is no recovery…because there is no CURE. There are however, high levels of management, especially in the higher functioning autism community, and I commend both you and your son on yours. Honestly, I do. I know you’ve worked your ASSES OFF at it, to get to a life in which you have become accustomed to in your own home. To where maybe you can take a shower on your own and not have to worry about your teen-aged son walking out the door and being hit by a car on your busy street every moment of the day. KUDOS TO YOU!!! That however, is only in YOUR OWN HOME. As the saying goes, when you’ve met one kid with autism, you’ve met ONE kid with autism.

I on the other hand will not claim to have a cure because my son is doing well. I will pray for more knowledge, understanding, help and acceptance amongst the neurotypical community. For those of us with high functioning children, I can see how some may “classify” the huge strides and gains as a cure…. call it semantics, call it whatever you will. But for all the families I have met, talked to, seen, and just simply know of, for all the families whose lives will never be the way they envisioned them when finding out they were having a child, I can not stand by and not be angry for saying you have a CURE for autism.

Those are my feelings about it – and like them or not, I am entitled to them.

~me

image is pretty self explanatory

blowing steam

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s