On the incidence of those with minimal or no speech
Those kids have always been there. In the past, before there was autism, they were just labeled “mentally retarded.” I’m old enough that the neurologist that diagnosed me originally didn’t know what autism was and just said I had brain damage. I had a definite, severe speech delay. Before there was autism, they were there. They were just called different things.
On increased detection on the mild end of the spectrum
Where you might get some increases are on the mild kids, where you have no speech delay. Kids with severe speech delays were always identified and labeled with something. Totally obvious. It’s totally obvious that something’s really wrong with the kid. Where maybe there might be increased diagnosis is the kid where there’s no speech delay, but he’s just kind of geeky and nerdy, and when he’s 8 years old or 9 years old, he has no friends. Nobody’s ever looked at the data to see if there are more kids that are not speaking. They just say, “Autism has gone up.”
On research dollars needed for sensory issues
The other thing I’d want to put research money into is how to desensitize the oversensitivity that a lot of autistic people have, where they have a difficult time tolerating noisy environments. There are definite abnormalities in the brain scans that show that fear circuits are getting turned on. A loud noise activates a lot more circuits in the brain than it would in a regular person. But what needs to be done is treatment.
On sensory overload in restaurants, public restrooms or airports
One of the things that makes it difficult for an autistic person in public is all the noise in a restaurant, [and in airport bathrooms] there’s a problem with the hand dryers and all the automatic flushing things. That’s a common problem area for lots of autistic kids. And one of the problems you have with the toilet flushers is every one of them is set different. You don’t know when it’s going to go off. They don’t always react the same way. One toilet that flushes after you get up, another toilet does it when you’re on it. The problem you got with those flushers is they’re so unpredictable.
We need to be working on ways to desensitize. We need to be figuring out the best ways to desensitize some sound sensitivity things. And why? Because that’s what makes the airport difficult is the bathrooms. Or the restaurant, there’s two things to make the restaurant difficult: just all the noise of people yakking, and then when you go in the bathroom, you’re going to deal with the hand dryers and the flushers.
That tends to be across the spectrum. And it can vary in severity. And some of the people that would have been labeled Asperger’s in the past can have some very bad problems with oversensitivity. One thing that was found anecdotally that seems to work is letting the child control it, turning on the noisy thing, a vacuum cleaner, car horn, whatever it is, let them control it and turn it on. That seems to be helpful.
On looking at environmental impacts in addition to genetics
On the milder end I think that’s all genetics.
Where you’d find any kind of environmental insult, you look at in the regressive group — where they get speech and then lose it — that’s where any environmental insult interact with genetics.
Then there are the kids that get bullied in school because they’re different. And then, since they’re having such a horrible time getting bullied, they tend to get diagnosed in late elementary school. Those are genetic. It’s what I read in the literature. It’s my conclusion. Where there’s an [environmental] insult, I think that most of that’s going to be in the regressives. That group needs to be looked at separately, really carefully.
On RFK Jr. saying he’ll have an answer to autism in five months
No comment on politics.
On admiring Elon Musk in her book ‘Visual Thinking’
That’s all pre buying Twitter. That’s before Twitter. We’ll leave it at that.
On facilitated communication, where an aide assists a nonspeaking individual in typing to communicate
There are some individuals who do not speak who can type completely independently. And for me, independence means no touching of the person, and the device has to sit on the table and not be touched. I’ve got to rule out cuing. That’s the only way, to rule out cuing.
On the notion that autism wasn’t prevalent 30 or 40 years ago but is today
They would have just been sent to an institution. They were labeled “mentally retarded” years ago. I escaped going to an institution. I was the kind of kid to go to an institution in the ’50s. But fortunately, a neurologist referred me to a little speech therapy clinic two ladies taught out of the basement of their home.
On the idea that autism is an epidemic
On the fully verbal end, I think it’s increased detection. They broadened the diagnostic criteria over the years. You can look it up. In the 1980s you had to have speech delay. Then Asperger’s came in the early ’90s, is to be socially awkward, no speech delay. Then in 2013 they cobbled everything together. They combined everything together.
The other thing that’s happening, on the very mild end, I’ve been talking to a lot of people lately, come up to me, they discover they’re autistic, got a diagnosis, they’re on the spectrum. They come up to me every single conference. People in their 50s and 60s. All in good jobs. And the diagnosis helped them with their relationships. A lot of these older adults, it was a relief. Now they understand why some of their relationships may not have been going all that well.
On the recent demand for services like speech therapists
Well, let’s talk about little kids. OK, I travel all the time, and in the last year, in about four different places I’ve gone to in the U.S., you have 2- or 3-year-olds with no speech. Definitely something wrong with this kid — no speech. They’re on two-year waitlists. That’s going on right now. I have talked right to those parents, “That’s terrible. Let’s look at where the services are.”
On a lack of intervention services in some areas of the country
A lot of places’ funding is running out. But there’s a definite, big problem right now with these speech-delay kids not getting an early intervention. Some of these speech-delay kids are regressives. Some of them are not. They are not getting early intervention. I was in early intervention by 2 1/2.
On screen time exacerbating behavioral issues
The 8-year-old that has no friends, fully verbal, that kind of kid, that’s where the screens would have an effect on the kids that I’m not seeing on the playground next to where I live.
I think screens contribute to that. These are kids that are fully verbal, often smart in school, that’s one subgroup I see, diagnosed around age 8. I run into those all the time at autism conferences. That’s a different group than the 3-year-old with a speech delay.
What do you make of this suggestion of an autism registry?
I don’t know how that’s going to help with their study. If I were going to do a study, find the ones that were the regressives. The problem is you’ve got so many subgroups.
The spectrum is really, really heterogenous.
On nonspeaking individuals’ high levels of perception, versus ‘The Telepathy Tapes’ purporting some have telepathic powers
Some of these individuals are very perceptive. They pick up on increased activity right before you pick up the keys that go in the car. They’re very sensitive to picking up those kind of cues. Before you pick up the purse to leave, you’re sort of running around tidying up the house. They pick up on that. [“The Telepathy Tapes” is a podcast, once highly ranked on Apple Podcasts, that made extraordinary — and dubious — claims that some nonspeaking children have telepathic powers.]
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