Monday, September 17, 2012

Warrior Parents

Autism parents take a lot of flack; “they just need more discipline” “maybe you shouldn’t take them out if they can’t behave” “they’re just spoiled” But autism parents who are ‘treating’ their children get that and more. “Don’t you know it’s genetic” “Why don’t you spend more time with your child” “You’re just looking for something to blame” “Autism is lifelong and cannot be cured” “I can’t believe you’re trying to change who your son is” “Early intervention is the only treatment for autism” I’ve never seen so much discrimination against a ‘disability’, in all my years.  Do families of cancer patients, Alzheimer's, MS, Diabetes etc. deal with the same?

There’s so much misconception around autism, that there are many who have no idea what it actually is. Autism is the ignored epidemic. The first cases of autism were noticed in 1943 and because it was essentially a rare condition, it was paid only a slim amount of attention. Around the 1980’s people started noticing more children exhibiting behaviours attributed to autism and some parents even went great lengths to try and figure out just how many children were affected in their community. The 1990’s rolled in and not only were parents becoming more vocal about the increasing number of children affected by autism but organizations were started to notice increases as well. With such little known about autism besides the requirements for diagnosis and with such little awareness about the diagnosis itself, it took sometimes years for a child to be officially diagnosed after the first signs and still does to this day. In the early 2000’s a movement started gaining momentum; parents of children with autism starting solving the puzzle themselves.

Not only were parents starting to figure out exactly what autism was, they were becoming even more vocal than before and with these parents able to use such means as the internet; they were starting to be heard by more people than ever before. Things are quite different now than they were in the 1940’s, not only are we living closer together and in higher numbers but also the internet helped give way to something that wasn’t available to parents before; easy mass communication. Parents are now able to compare notes faster and in greater groups, they have not only brought about more awareness to autism, but have also paved the way for the swarm of new autism parents that are to follow. These parents have revolutionized the defining factors of autism and mainstream is years behind the discoveries made by these people.

We’ve gotten here today, because of how ignored autism was. It all begins when a child is diagnosed with autism and the parents are told something to the effect of; we don’t know the cause, it is lifelong with no cure, they will most likely never talk, you’re best to just give them an enjoyable life, because their intelligence level will stay the same and nothing you can do will help. This is where the divide begins, some parents accept what the doctor has told them and some parents refuse to accept that there would be no help, no solution or no investigation into this whole autism thing. Parents were the first starters of early intervention. Their efforts in trying to teach their children, to not leave them left behind, to refuse to let their children be unable to have the same opportunities as other children.

As early intervention picked up speed amongst the parents -all the while mainstream had yet to acknowledge it- increasing numbers of children brought about more parents forming groups to exchange information. They only had each other as in many cases, friends and family suddenly found themselves too busy to visit, these parents support system had become null and they sought out each other for comfort. During this time as the numbers increased there were more and more parents talking about regression; a healthy born baby, progressing normally or above and then losing all or most of the skill previously achieved. Was this new, were parents paying more attention or were they starting to be heard and pass information for the first time ever. I’ll put my money on all three. Out of this spawned another group of parents, parents who were noting physical symptoms in addition to learning/skill/social regression. The take action movement that early intervention parents had started evolved into a movement that is putting the pieces together in this puzzle that is autism.

Not only do we know more about the similarities and differences between those with autism to the point that we could better group and diagnose, but we also know what is really causing autism and how to treat those affected. You’d think that these parent would be commended for the years of effort they have put in and for the discoveries made, but alas not only are they being ‘blacked out’ from mainstream, they are also meeting anger from those who feel that by ‘removing the autism’ you are also taking away who that child actually is. Autism has now become both controversial and political because of the gaining vocalism from parents who are just trying to help their children and make their lives better. Now if someone had discovered not only the cause of, say down syndrome, but also ways to treat it, would they too be met with; ‘it’s genetic there is no cure, you are talking quackery’ or ‘you’re trying to change who they are’

While mainstream is just grasping that early intervention is possible, this growing group of people are doing what no one else has; they are helping parents and children. What started out as institutionalize is the only option due to refrigerator mothers, to there is hope, support and children starting to recover.  Their personalities do not disappear, they lose the restrictions that autism brought and their bodies become healthy again. Doesn’t hope, support and recovery sound better than genetic, no cure and you’re on your own?
Autism is become larger because more and more children are being affected; an estimated 1 in 29 toddlers will be diagnosed with autism. Nearly everyone knows a child with autism and diagnosing has just this last 2yrs, gotten the push to pay closer attention. While the messages get muddied by the media and other self interest groups, more and more parents are finding these parents and using their knowledge to help their own children. Perhaps years down the road, mainstream will have no choice but to catch up as they had to with early intervention and maybe then we can put a halt to the ever increasing children being diagnosed with autism. If today it is 1 in 29, what will it be in 5, 10 or 15 yrs from now?

They even have a name that’s catching, warrior mothers, warrior fathers, warrior parents. They don’t always call themselves it but by golly they surely deserve it! They spend hours helping their children, discovering who they are, what their qualities are, what obstacles they face and see them as any other loving parent would see their child, but with determination. When they actually have time for themselves -whatever little that may be- they usually use most of it to study, research and plan for autism. They also take every moment possible to be vocal, spread awareness and advocate for their own and others affected by autism. They are some of the strongest, determined and hardest working people I’ve ever come across and instead of the praise they should receive, they are met with anger, abuse and mistrust. Yet still, they press forward and while they are still hurt deep down by what others say to them, they never let it deter them from fighting for the truth, for these children and for action.

These parents are truly the warriors of today and without them, my son would still be sitting in the corner rocking, spinning the wheels of a care for hours, while ‘zoning out’ and be unable to look at me, unable to be close to me, instead of the wonderful, expressive, imaginative little boy that he is today.

I chose this post to thank not only all the warriors before me but also the ones currently fighting today. You are making it possible for children and adults with autism to receive the services, support and possibility for a better, pain free, obstacle free life that they have today.

Thank you for your courageousness, your efforts, the sweat and tears, heartache and sorrows that you endure in order to change the face of what autism is. Know that parents everywhere are truly grateful for your voice and knowing that others stand beside them while they fight for the same cause.