As promised, here is an analysis of the National Housing and Residential Supports Survey that is on Autism Speaks website. I’m gonna break this post into several quotes and reflect on them. It is possible that this may take several posts to finish because it is a 20 page document. But maybe it won’t, so we/I’ll see.
“The survey was intended to identify the most important and commonly recurring housing needs within this community and highlight the concerns of their caregivers when it comes to providing for these needs” (1)
So the concerns of the autistic people is not important for this study.
“In order to quantify the needs of young adults and adults with autism on a national level, it is necessary to listen to as many individuals as possible, as well as their parents or caregivers where appropriate…In July and August 2013, online surveys were completed by over 10,000 people, including nearly 400 individuals with autism” (1).
This quote starts off so well, but then it devolves into Autism $peaks BS. So, the authors claim that in order to know what autistic young adults and adults need on a national level, we need to listen to as many autistic young adults and adults as possible. This means that they will only look at information from parents and caregivers when important.
In other words: We want autistic voices because they can tell us what they really need. Then, once they do their study, they go, “JK, we’re gonna go ahead and do the opposite. We’re gonna survey 9,600 caregivers and 400 autistic adults because…yeah, because.”
“Despite the support needs of the individuals with autism, only 24% of caregivers reported that the individual is currently on a waiting list for support services. This statistic demonstrates the need for additional education and information for caregivers about the importance of adding their child’s name to waiting lists as early as possible in order to have the best chance of securing housing and residential support services as he or she enters adulthood” (5)
There is an unstated assumption here that all autistic people need to be on a waiting list for support services. I will grant you that some do, but I don’t think every single one of these families need it. This idea is further supported later in the document when they go over the 400 autistic responders who said they want support when they need it, not 24/7.
“46% of [the caregiver] respondents said that the ideal situation for the individual was living at home with his or her family. 12% indicated a group home was most ideal and 10% thought his or her own home with a roommate would be the preferred option” (6)
Um…is there no option for an autistic living on their own? If that were an option, then this study would have said that there were 0% or no respondents who chose that option.
I just can’t believe that they state that they think its imperative to hear as many autistic voices as possible and parents on the side and then go forth and survey 400 out of 10,000. I recognize that that is more than the average population of autistics in America (that’s around 1%), but to say that it is important to listen to autistic people and survey 4% of a population of 10,000 is invalid.