This is in response to many posts I have seen about Autism awareness and other issues within the autism community.
Currently it seems there are 2 very different camps in autism and they do not work together for the community as a whole.
One camp is the very high functioning or aspergers parents who a) who want acceptance for their children who are almost neurotypical and present their children as the only face of autism and b) think the idea of a cure is a threat to their children's existence and uniqueness. They are the ones who blast the idea of a cure and push for people first language, ie My child has autism, its not who they are. Their children are not autistic, they have autism, like others might have a cold. They want their children accepted as the new version of normal and for others to not see autism as a disability but another ability.
The other camp is the parents of children FAR more disabled by autism. They look for cures in very unlikely places and often are looking for somewhere to place the blame for their child's condition. They also seem to only allow you to join their camp if you win a contest of my child is more disabled than yours. If your child is too verbal or goes to regular school then you cant possibly know what its "really" like to raise a child with autism. If your child is high functioning then they dont really have autism and are just looking for free ssdi or other benefits.
I would love to see a third camp arise out of the ashes of both other camps. Our child have autism. They are autistic. All of us have difficulties and challenges raising our children. We need to start acceptance at home within the autism community. Accept that all parents of children with autism face huge challenges and difficulties. Accept that what works for one family doesn't work for all.
Our children deserve to have research done into autism so that the OPTION of a cure is variable. Do I think all children should be cured upon diagnosis? No. That's not appropriate. I doubt the cure if its ever found will be without risk or side effects. The end result HAS to out weight the possible negative effects it will have on the individual. But the chance should be there to remove the truly debilitating and negative aspects of autism. All of our children should have the chance for an independent fulfilling life. Without a cure or far more effective treatment options that is not possible for far too many of our children with autism currently.
Our children deserve to have the level of awareness and understanding of their condition raised to the point that we are not fighting with schools and other programs or society for inclusion and support every day of our children's lives. The level of awareness and understanding should be high enough we do not feel compelled to live our lives in the shadow to avoid the judgmental and hateful looks, comments, actions, etc of society in general. Society should be aware enough to offer services to our community like sensory friendly films EVERYWHERE because its the right thing to do.
That is the awareness I fight for. I have been blessed to have 2 high functioning children on this autism journey. I do not forget for one second that many are not that fortunate. While I do not think my eldest with aspergers would want to be "cured" I'm sure he would love to not be so physically sensitive to touch. While my youngest may not need a cure as he is very high functioning autism I think he would love to not have the verbal apraxia he fights everyday just to express himself and to interact with the world he lives in. He would love to not have most alarm bells or a person shouting in the same room cause him physical pain. Both would love to have far more friends than they do because of the social effects of autism. And research along the way to a cure could provide answers to remove the negative benefits of autism for those who choose.
But we are all on the same journey and there are no separate levels of passengers on this ship (first class, steerage, etc). We are all parents or people affected by autism. No one person's challenges with autism should be denigrated because they are not the same as yours and are perceived to be less than anyone else's. We as the community most affected by autism should work together to achieve this one goal for our children, Awareness that they have a disability, Understanding by society as a whole of what that disability encompasses and Acceptance of our children into general society without reservation.
To achieve this goal we need to work together to educate society in general and our own autism community what the face of autism looks like by showing as many faces as possible from all levels of the spectrum. Now is the time to stop hiding in the shadows and hiding our children's disability like we are ashamed of it. Force society to remove the "shame" of autism and welcome our children into it.
We need to work together to dictate what accommodations should be required for our children to go out in society much like the requirements for the physically disabled (ramps, elevators, door widths, etc). Do we want all elementary students to be offered an 1:1 aide and ABA therapy if they are diagnosed with autism? Do we want homework accommodations mandated? Do we want noise volumes and light levels regulated in the classrooms and other public spaces? Do we want teachers,other educators, police , fire and other first responders required to have general training in autism, and how to handle meltdowns and other outbursts, etc? This is more important than research into why or cures. Its obvious that autism is extremely complex and will take years or decades to truly understand the biological workings of it before we can think of truly effective treatments or even a cure. In that time thousands of our children will age out of the safety nets in place during the school years. They need our action now not decades later.
In the end it may require a cure of some kind to be researched and found to ultimately provide the best level of accommodation for some of our children. We as the autism community have the opportunity through education of society to shape what that cure looks like and whom it is offered to. We as the community affected by autism have the opportunity to define autism to ensure none of our children are excluded from needed services. Any parent who honestly says they wouldn't change any aspect of their child with autism if given a chance either isn't being honest with themselves or their child doesn't have autism. Otherwise why would we fight for therapy services and accommodations on their IEPs? Honestly not everything with autism is champagne and roses.
But regardless of any cure now or in the future we are a large community. One that adds a new member every minute of the day and its time to join together.To accept each other as members of this community without judgement as to our worthiness to belong. We need to make autism deniers like holocaust deniers unacceptable. Autism is real and our children have it. Society must make a place for our children because there are far too many of them to hide any more. And we in the community need to work together to achieve our goals and create a better life for our children. Its time to join the camps and stop the in fighting and judgement of each other, for our children because that is why we are all here.
