Posted April 2020
Posted April 2020
Autism. According to the organization, Autism Speaks, an astonishing 1 in 54 children are affected by this condition. Those considered mildly “on the spectrum” can grow to be functioning and productive adults. Sadly, those considered severely autistic will require attention and care for their entire lives.
Autism is no respecter of persons or class or status. It hits the rich and the poor; the famous and the faceless. Fortunately, those famous who are affected are not sitting idly by as their loved ones live in that mysterious cage.
One such person who is actively involved in making a huge difference in the world of autism is Kristen Stills. She and her husband, legendary rocker, Stephen Stills, have a son, Henry, who is autistic. Kristen is rocking the autistic community with her active participation in not only helping her son and others who are on the spectrum, but she is also a formidable advocate and fundraiser for research and support for the autistic community.
Twelve years ago, Kristen was the executive producer for the HBO special, Autism: The Musical, “a poignant, heartwarming film that followed five children on the autism spectrum as they wrote and performed their own musical.” HBO recently commissioned a short follow-up film, Autism: The Sequel, to see where those children are today.
Like many people, my knowledge and understanding of autism is minimal, at best. When I saw that Autism: The Sequel was going to air, I reached out to Kristen for education and insight into the condition and the sequel. Note: though this article has run after the original airing of the sequel, it will be available on-demand on various streaming services.
Kristen started by sharing the history behind the sequel, beginning with “The Musical” and what we know about the condition.
“We shot it 14 years ago, we released it in 2007. All of the kids from that film are in the sequel. You see them as children. Then, on the 28th, you will get to see them today . . . transitioning into independent or inter-dependent living situations.
“Autism, itself, is a neurological developmental disorder. There are so many representations the communication piece is the really tough part because the young child on the autism spectrum may not have the impulse to connect with people. They're more inclined to kind of go into their own world, that's one of the primary, core symptoms. When that happens, the world becomes more and more unmanageable for them.
“So, in other words, if you take a child to a grocery store who is on the spectrum and let's say your parent doesn't know that about your kid yet, and they've just been sort of withdrawing into themselves more and more. They are aiming for controlling their own environment in that way as well. The music that's being piped through the grocery store is probably going to be too loud. The lights are too bright. The activity of people is too much to manage. It's all just overwhelming and confusing and that creates a lot of anxiety in the child. That is when you will start to see behavior which is a reaction to trying to manage all that sensory overload and the tantrums or throwing things or hitting parents or screaming. That's when stereotypical behaviors that people associate with autism are really just coming from a place of frustration and fear. That is a very simplified version of what autism is because it's such a complex disorder. Other developmental and neurological issues could be OCD, ADD. Tourette’s kind of weaves into there for some of the kids. It's really is case by case, depending on the child.
“Then, of course, the well-known characteristic is sometimes that the individual is nonverbal, so they cannot speak or initiate language. They have to be taught how to communicate in language or, in this day and age, technology.
When I shared with Mrs. Stills my limited experiences with severely autistic kids and adults and my inability to communicate with - or understand - them, I asked what was going on.
“Well, there's just an inability for whatever the reason - there are theories and scientific research as to why they are non-verbal and cannot initiate speech or language. But for those who are most severely impacted by autism, it's just not in their brain wiring to connect with another human being that way. So, when an infant who is neuro-typical, as they say, not affected by autism or any of those kinds of associated disorders, they want to connect. A baby wants to connect and communicate with the mother and the father and siblings and the dog, and that's the typical brain wiring of a human infant. That's when we see in our children what are known as milestones. You'd see a baby babbling and then you'd see a baby using one-word utterances and then ‘Momma’, ‘Dadda’ - whatever it is and with an infant on the spectrum you probably won't see those things as milestones being hit and other milestones, including crawling. Crawling is a really important thing because - not to get too geeked out on all that terminology - but when a baby - an infant - starts crawling, they're crossing the midline of their body, which integrates the left and right sides of the brain, which is necessary as a normal part of development. The idea is to have both sides of the brain working together in concert as needed and the crawling is actually making that wiring happen. So, if you don't see your infant crawling, that's an issue.
“When you see a pediatrician with an infant and they ask you those questions, ‘Is he crawling? Is he doing this? Is he sitting up? Is he rolling over?’ - all those things that doctors ask you? One of the reasons is that they are not doing those things. There could be a developmental issue. And that's one of the signs of autism - not meeting those marks.
“So why are they non-verbal? Hard to say.”
Autism: The Musical shows kids on the spectrum – one, in particular – with amazing musical talent. I have noticed similar abilities in others in the past. I asked about that.
“A savant ability. You will see that in both of these films, by the way. We have at least one child who is a musical prodigy, so it's very common. The way that I describe that, which is not scientific: imagine that there's some kind of a traffic jam in the brain and the cars can't get through a certain area, so that would be just regular, narrow transmission that is not happening in some area of the brain. So other areas of the brain will wire more profoundly. That is where you will see this kind of extreme talents and gifts. Because if one part of the brain is not functioning properly, the brain will change it. It will rewire itself if there's a weak, a very weakened, compromised area, it will wire very strongly in the other area. You will see that in autism. You'll see that child - he's a cellist and you will see him as a child playing his instrument, and then see him as an adult and how much he progresses. It's a pretty phenomenal story. He's at Berkeley School of Music. It's an interesting story because his mom here. His mom has to be with him a lot of the time. There are these moments where you see him wanting to separate from her and the mom always wants that, but sometimes the kid can put himself into danger. They're a vulnerable population. They might get in the car with somebody. They could wander off and get lost.
“I have a friend who works at a local police force trying to train the officers about how an autistic person might behave if they had some kind of interaction with police officers because some of their behaviors just look like defiance. That can get you into a lot of trouble with an armed officer of the law. So, as much as parents want to sort of let them be more independent, there's a tremendous amount of fear around that.”
Later in our chat, Kristen commented more on the possible causes of autism.
“It’s very hard to know why some are impacted more than others, you know? There are genetic predispositions, there's family history. There are some people who believe environmental reasons that is a very hard thing to prove, so to speak, because it's just tricky. I believe that Autism Speaks - they're the organization that we do a lot of shows for - have embraced that, as well. There are certain pockets of the world where you'll see a high occurrence of autism and that certainly leads people to believe that there's some kind of exposure to something that is affecting their development, whether prenatal or early childhood. They're just genetic mutations that contribute to it. It's myriad.”
As to what she hopes viewers of Autism: The Sequel take away from the film, Kristen said:
“It just so happens that the kids - we chose kids for Autism: The Musical. We just chose a bunch of kids to do a musical theater production and we sort of thought we'll figure out who and where the great story for a documentary film audience will emerge and reveal themselves in. And, indeed, that's what happened. So, it just so happens that we got it. My big insistence in that process is that we show kids of varying severity of autism. We went from the highest functioning - which would be my son, Henry - to the most severely impacted and kind of a range in between. Fortunately, the sequel gives people a lot of hope - people that have a young child at home and they are very concerned about that child's capacity to be in the world and have a full and rich life. We believe that the sequel will give people a lot of hope and promise that their child can have a good experience, you know. And that, you know, also there are a lot of things - we make a lot of assumptions about these kids and what they can and cannot do. Gratefully, we've made mistakes. We're not at all accurate about what they can and cannot do. They will surprise you. They surprise you in odd ways and I think that will be shown in the sequel, as well. From the perspective of a parent that's raised a kid on the spectrum, you are in a great deal of fight or flight while you're raising these kids from the moment they start showing behaviors that concern you until forever, you know? You're in a state of just making sure that they are safe and thriving and protected and happy, which is the job of every parent. But what it takes to get them there is much harder and it can be very tough. So, we think this film is going to show people that these kids will exceed everyone's expectations if given the opportunity.”
How can readers help Kristen help those who are on the autism spectrum?
“Well, the film itself is not necessarily connected to Autism Speaks. However, some of the kids in the film are - the actual musical theater program that featured in the film was supported at some point in time by Autism Speaks. I think it would be great (to donate to them) because right now is Autism Awareness Month. They have a donation page when you go to their website. This is a very tough year for all charities, obviously, because of what's happening and events being canceled. That's what we're doing and we know one of the reasons we had attached to that organization is that it's multifaceted. What they do, they do political advocacy. There are services for families and individuals on the spectrum, science, and research. There's a spectrum of things that the organization does to keep active in as many areas where they can be helpful as possible.
As we wrapped up our call, Kristen stressed a valuable point near and dear to many of us.
“Boomers are people that have grandchildren on the spectrum. At this point, most people are affected in some way by somebody on the spectrum and not. It's just that widespread. The current statistic is one in 54 people have autism so that that's a great number of people.”
If you don’t already help support an organization that helps those affected by autism, then please consider contributing to Autism Speaks by clicking on their logo on the left. Watch for fundraisers that are in the process of being scheduled and/or re-scheduled.