I Don't Believe Profound Autism is On the Rise

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I have a 24 year old profoundly autistic daughter. Through the years, it was extremely rare for me to randomly come across other parents with kids like my daughter unless I was in a place where they congregate.

I often meet autistic people who are the Asperger types because the autism diagnosis has been broadened in the past bunch of years.

So it makes me so resentful for groups like Autism Speaks to use the stats of the whole spectrum and insinuate that they're all like my daughter to scare people into giving them money.

If all that autism research money were going into studying seizures, maybe they'd find a cure for something that really, desperately needs curing.

I agree completely. Many autism organizations use their funding in highly inefficient and not terribly helpful ways. Tha money could be much better spent providing health care/other services, rather than trying to "cure" autism.

Exactly right.

The focus should be on the individual problems and barriers each Autistic has to deal with. It makes much more sense to focus on innovative communication technology, innovative approaches to education, and developing the accommodations, and social changes necessary for more Autistics to enter the work world or higher-level mainstream education.

One does not fight sickle cell anemia by researching the cause for Africanism. One does not fight uterine cancer by researching the cause for for the victim’s gender. And one should not fight the various co-morbidities suffered by Autistics by researching the cause for Autism.

Accept the fact that the autistic has a different mind, and then get on with the work of helping them grow into the best human being possible.

As for Autism Speaks: Yeah, we get it. Some Autistics are in dire straights due to the intensity of their Autistic traits. Some are engulfed by co-morbidities. These children need a directly focused campaign aimed at finding solutions to as many barriers as possible - dedicated to removing pain and improving quality of life. Unfortunately, AS has told us, time and time again, that they are going to deal with only those children most affected. In fact, they hardly acknowledge the problems, or even the existence of adult Autistics, or those with language and intellect.

So, this means AS has isolated its market to only those Autistics who cannot speak, and must rely on their parents to represent them. And then, though they are frightened enough by their circumstances, AS further terrorizes them with videos and PR and publications that paint Autism as dire and hopeless and disgusting. They limit Autism to those most afflicted, and then use those children to define “Autism.” This is dishonest, and wreaks havoc on the lives of those on the rest of the spectrum, but it suits the purposes of Autism Speaks very well. Autism is always dire and threatening, the victims always young and powerless, the parents always dedicated and desperate. The politicians and the media are in love with Autism and the money rolls in.

Given how Autism Speaks has focused on the lives of the most afflicted – and picturesque – it would make sense that all this money go toward fighting all the pain and agony they expose so powerfully. But, it doesn’t. The money goes toward a “cure.” The children stay silent, the parents stay confused, yet resolute, and the money keeps coming.

And Autism Speaks continues to insist that they own the word “Autism.”

gitchel, you stated the problem very well! Thank you!

One organization will never meet the needs of everyone on the spectrum. That's why there must be many organizations. ASpeaks is a fairly young organization and has grown rapidly. It was started by concerned grandparents. Surely, if they can do it, then all the Asperger adults can also begin their own organizations and fight for what they want and need.

Again, too much complaining about one organization and not enough out there about what Aspergians are doing to bring their plight to the forefront.

Even if AS did speak for only the most severist of cases and youngest of cases, so what? Apparently millions feel there is a need for that and keep pouring money into them. Why? Because there is a need for it and it's proven that Early Intervention can make all the difference in the lives of these kids. That's why the focus on early childhood. So, why don't more adult Asperigans speak up and start their own thing? I'd rally behind you the same way I support them. You can count on me.

Regarding the OP's question, I don't see a decline in the diagnosis of the cases before the kids enter Early Intervention. What I've seen over the past few years are more and more kids entering who are pretty low/severe on the spectrum. However, Early Intervention is the reason why you may see a decline in severe Autism cases over time. Kids get reassesed all the time especially when it's time for their annual IEPs. Due to EI, I see kids who were severely Autistic going mainstream and some even losing their Autism label. Early Intervention is literally changing the lives of an entire generation of children. I see it everyday. I see kids who came along with my son now doing very well and will one day live independent, productive lives. Therein lies the difference.

My gripe is that Autism Speaks is built on lies, if they pull in stats about people on the spectrum who were never diagnosed as profoundly autistic and use them to puff up the case for more research on the profoundly autistic kids.

It's like, if cats and dogs were being tortured and some campaign used the stats about pet torture to insinuate that the only animals being tortured were dogs so that all the money that they collected went to only help dogs. My aspy-like son's needs are so different from my daughter's needs but they use his diagnosis to ignore him and get parents to focus on people like my daughter but not to help people like my daughter. Instead, they get parents to picture their profoundly autistic kids as someday being cured. Then when their kids grow up without proper supports, the parents are helpless about what to do with their uncured burden.

OregonBecky, I hear what you're saying and I don't disagree entirely. But, why is the whole salvation of the world of Autism falling on the shoulders of one organization? We support ASpeaks, but we also support many organizations. And, we've got local groups/orgs/agencies that we turn to for more specific needs...things that address our kid's life day-to-day. I don't know why people are all bent out of shape over one organization when there are MANY out there they can support and achieve what they need to. If the bottom line is that there needs to be groups for older Autistics, start one. Obviously there's a need. But, as I've said many times on this board, picking on one isn't going to serve that need. And, ASpeaks is young. As time goes on, I definately think they'll have an entire advocacy branch of the chairty specifically for Autistics transitioning into employment, independent living or institutional care. But, that doesn't mean they can't push for a cure as well. A good organization doesn't just focus on one thing. They are dynamic and are attacking many problems that compound the issue.

Also, I don't know where you live, but it is local/county/district/state organizations that people truly go to for Autism services. ASpeaks can advocate, but these are the places where parents need to go if/when they need living support for their older, Autistic child. We've got many programs in place where I live for older Autistics and depending on the financial situation of the family, some qualify for other government assistance like housing and paid in-home support.

I don't see parents who are apart of it pushing only for cure. I know many, many parents who support Autism Speaks. They want as much exposure and advocacy as possible and if a cure comes along, that's icing on the cake. But, if the very thought of a cure offends some, they need to start their own groups that don't offend them and work towards the needs they have.

Plain and simple. That's been my message from day.

The school districts around me are certainly aware of an increase in the number of severely autistic students. My mom, who is a school psychologist, is convinced there are many more severely autistic children around these days, at least in our area.

Newportbechdude, I truly hope that things evolve in better ways for autistic people. Your approach might build brideges, rather than my approach of hitting them over the head.

I'm just frustrated because when my daughter was little, it seemed most of the parents around me with kids like mine refused to comtemplate any other future except for a cured kid. Now that my daughter is grown, we have to do so much work at every turn to get the right kind of services and understanding that my daughter needs. She is the first generation who grew up outside of an institution. We're paving the way for the ones who come after her. It's not easy and I deeply resent the parents who refused to face realities when they had better chances for preparing for the day when their kids grew up. It means that, perhaps, the last thing I'll be thinking about right before I draw my last breath is "Now my daughter is going to be sent off to the foster home dog pound"

I'm spending the rest of my life to try and make her future better than that but it's an uphill battle.