ROBERT MACNEIL: Well, perhaps he's right.
We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.
But they speak for themselves. And we didn't see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.
As the mother of an adult on the spectrum who is not "high functioning" in the way that MacNeil is speaking of, I find the lack of concern for adults on the spectrum and the peculiar belief that "a lot of adults...are high-functioning," speak for themselves and therefore don't need to be seen on his series offensive.
First, we don't actually have any good numbers for how many adults on the spectrum there are nor do we know what their functional levels are. We do know there are not enough services and programs for them, though. We don't even know how many autistic adults continue to rely on their families for their care because there are not adequate living situations that would allow them to live on their own in assisted living situations where necessary. We don't know how many are employed (although what research there is shows most are NOT employed).
Second, if MacNeil believes that adults on the spectrum are doing just fine and speaking for themselves, then what's his worry; all these kids with autism must have nothing to worry about; they'll be fine, too, right? Come on; this ignores the reality that the need for support continues throughout the lifespan, even for those who are doing relatively well (even if that support may, for some, only be social support and an empathetic community).
Third, in a series giving an overview of autism, autistic voices should be heard; their interior reality ought to have as much weight (if not more) than family members' realities. Many autistic individuals are capable of communicating their self-evaluative realities, even if it's done in a different fashion, and they absolutely deserved the right to have that opportunity.
In the episode dealing with education, MacNeil, rather than having a disparaging narrative overriding his sitting there on the boy's bed watching him talk animatedly about his collection, could have asked him about what it was like for him to be autistic, what autism meant to him, what his hopes for the future were, what his concerns were.
An entire segment could have been devoted to interviewing a range of autistic individuals across different ages and severity levels. MacNeil could have asked them what they wanted the world to know about what their lives were like with autism. He could have included people who desperately want a cure to those who have found their way and their place. He could have included people with severe co-morbid issues and need 24/7 assistance to those who live independently. He could have interviewed young children like his grandson, who is verbal, to older adults, who've had decades to live with autism and how its reception in the world has changed.
He could have done something very powerful with his journalistic experience. He could have been the conduit to something amazing, to something that ran the gamut of the autism spectrum and really gave the world a window in to the autistic experience, all of it.
