When The Autism Channel asked us to create some one-minute pieces for Autism Awareness month, we thought it would be good for Sam (Rocket) to tell one on himself. Sam has always had supersonic ears. But we soon learned that sensitive hearing does not equate to listening. Part of what distracted him was that he was hearing his own heartbeat, the sound of ventilation systems, the sounds of ticking clocks—things you and I would normally filter into the background of our conscious awareness. Sounds like these were as front and center to him as human speech directed at him. He simply was unable to filter any sound from the Surround Sound™ of life.
…his attention to the world of sound…
“the music of the world around him.”
He was steeped in his autistic world and we were trying to reach him. We could see that he was distracted by sounds it seemed we simply couldn’t hear. As his parents, we felt we could find a path to relating to him by following his attention to sound, what he now calls “the music of the world around him.”
This lead to some unusual activities, like riding up and down elevators ad nauseum and listening to the mechanical squeaking sounds of them; like finding all manner of trickling, dripping, leaking, splashing, crashing or running water; like learning how to tune in to the faintest whispers of music in various settings like restaurants, malls, or while driving by other cars.
When I think of where Sam was when we started this journey (the autism part) sixteen or seventeen years ago…had I seen this video of his future self, I would never have believed it possible. To watch him confidently stride along, talking about his sensory issues and acknowledging the depth of the impact his parents’ playing together with him had on him (even when we didn’t “get” the game), I am amazed.
Autism, of course, has changed all of us. Aside from making us stronger, it has also taught us the value of playing. When we made this video this weekend, it was just like…dare I say…the “good old days,” playing with Sam, following him down the rabbit hole to a source of sound that lit him up and made the wild world wonderful for him.
But, it’s not over. As we trudged out to the end of the jetty where the Wave Organ was this past weekend, we passed by The San Francisco Yacht Club maintenance building. There, some men were doing something that had to do with sailboat racing. One guy, looking through binoculars at the sailing boats in the bay, yelled, “Prepare for gun!” We were like…huh? …what? As we looked up, he was brandishing a revolver and wearing ear-protection head gear. Sam got it instantly, held his ears, and hopped away like a bunny. I was still taking in the information when the gun went off.
It was almost like one of those jokes the universe plays on you. In the past, Sam would have completely fallen apart with an event like this. But he handled it and moved on. His dad remarked, “How ironic. Here we are going to make this piece about sound and sensitivity and this gun goes off.” Sam laughed. Wow! Who ever could have guessed that he — and we — would come so far.
Sally Park Rubin is the producer of The Rocket Family Chronicles seen on The Autism Channel
Unbridled joy! is how Tom (Greg Germann — Ally McBeal, Law & Order: Special Victims Unit, NCIS) describes 16-year-old Mandy (Ashley Rickards – Awkward, American Horror Story, One Tree Hill) who is severely autistic. This also aptly describes the powerful, award-winning motion picture Fly Away. Written, produced and directed by Janet Grillo, the film skillfully and accurately depicts the day-to-day struggles of a single mom trying to raise a severely autistic teenager girl.
…the film skillfully and accurately depicts the day-to-day struggles of a single mom trying to raise a severely autistic teenager girl
Tom has a romantic interest in Mandy’s single mother Jeanne (Beth Broderick — The Closer, CSI:Miami, Lost) whom he meets at the dog park. He becomes Jeanne’s mirror as she fights against all odds in trying to create some normalcy in her young teen’s life. Mandy obsesses about airplanes and flying… Jeanne obsesses about her daughter. Every night Jeanne must sing, “Ladybug, ladybug, fly away home…” to help her daughter sleep. But usually, Mandy wakes up from night terrors screaming hysterically, “Bad Mandy, bad Mandy…” and Jeanne must console her.
Jeanne has to keep Mandy’s life extremely structured with time-consuming charts to help keep Mandy from sliding into severe temper tantrums. (One time she threw a desk at a classmate.) Exhausted and feeling hopeless, Jeanne places her own life on the backburner to keep “rescuing” Mandy from herself. Ironically, Tom is compelled to rescue Jeanne from herself as she loses her own identity in her daughter.
Ultimately, the budding relationship between Tom and Jeanne fails because of the daily trials that saddle Jeanne’s life. Also, the stress of constantly taking care of Mandy without a break, has caused Jeanne to lose her job as well as her carefully controlled universe. Her ex-husband and the principal of Mandy’s current educational placement push Jeanne to place Mandy in a residential school, but Jeanne sees it as “institutionalizing” her daughter and can’t do it.
The movie touches your heart and soul even if you do not have a child on the autistic spectrum. There are some light-hearted moments such as the time when Mandy innocently mimics someone in the pizza parlor and says, “Sh–, sh–, sh–!” over and over at the top of her lungs, to the shock of the other customers.
As the trailer suggests, parents of children with autism someday might have to realize “when love means letting go” and allowing their young ones to fly on their own.
Fly Away is available for streaming on Amazon and iTunes and on DVD.
Debra Clark is anchor of the upcoming Autism World News on The Autism Channel.
In the last month, there’s been a lag in production on The Rocket Family Chronicles set. Why?
The Rocket Family Chronicles was born out of a project entitled “maivens” which is a TV pilot script about four woman-centric families. In order to sell “maivens,” I produced some promo pieces based on the family that most resembled my own—Rocket’s family. By the time we were done shooting it, we all felt that the show really needed to be focused more on Rocket than Maive.
This posed a serious concern for us. Up to this point, we had only operated on a need-to-know basis regarding Sam’s (who plays Rocket) autism because he holds his own as an actor. He’s a consummate entertainer and a serious professional, so his dad and I were concerned about him coming out as an “actor with autism,” since there is still a pervasive lack of understanding about strengths associated with autism.
But by then Sam himself was “coming out” about his situation. And he had just finished writing his book—And Action! My TAKE on Autism (and Life)—which chronicles how acting and film making made the world relevant to him and helped to draw him out of autism. We followed his lead. We created the Intro’s and Outro’s to wrap the episodes to make them more Rocket-focused.
Since, we have always looked to the innate intelligence behind whatever stage of autism Sam was experiencing, we weighted the Intro and Outro wrappers to look towards the positive aspects of autism.
We had a limited number of episodes, so we decided to create the Rocket Extras to stretch out the material for The Autism Channel. We felt that the Rocket Extras were a great opportunity to provide insight into some of what we’ve learned as autism parents. We consulted with nutrition expert, Kelly Dorfman, who has helped over many years with Sam’s recovery. She suggested the character Professor Neurotica. We put a wig on Sam and the rest is history.
Recently, we added Sam Snoop Private Eye. Ed Rubin got the idea to make it like Film Noir. It was inspired by The Maltese Falcon. The original working title was The Gut Detective. As a family, we went crazy (but had fun) researching all the Film Noir spots in San Francisco where Humphrey Bogart, Hitchcock and others have shot their films. The upcoming Sam Snoop episode, The Case of the Foggy Brain, has taken almost a month to complete for two reasons: 1) We got a little hyperfocused on the Film Noir concept, and 2) in between, Sam made another film for which he needed to have a beard.
…it’s been a busy month on the Rocket set. Rocket will be back this Friday…
The independent film, directed by Max Sokoloff, was created as a short to be shown at a film club that Sam runs in Berkeley, California at Tom Franco’s Art Collective every other Saturday night. If you’re in the Bay Area, please check out the club.
So, despite the fact that no one’s seen Rocket lately, it’s been a busy month on the Rocket set. Rocket will be back this Friday on The Autism Channel as Sam Snoop Private Eye.
Sally Park Rubin is the producer of The Rocket Family Chronicles one of the most popular series on The Autism Channel.
When most of what you do revolves around autism, you come to believe that everyone shares some kind of base level of understanding. At one-in-50, most everyone today at least knows somebody who cares for someone on the spectrum or is on the spectrum themselves.
That’s why I came away from Five Guys the other day with more guilt than the off-my-diet meal I brought home called for. I was wearing a polo shirt with The Autism Channel logo on it, and the counter clerk saw it, and started talking autism. Suddenly, I was giving advice to the mother of a 6-year-old boy who is on-the-spectrum and appears to have had no intervention at all.
The saddest are those who know, and do nothing.
“He’s getting very difficult to handle. You wouldn’t believe it.” Of course, I did believe it. She asked me what she should do, and I silently wished I had an easy answer; a rapid-response team that would parachute into her life and do all the work she should have been doing that somehow would retroactively bring the intervention that is proving to have such great effects when it is early.
The exchange brought home to me how many of these children are falling through the cracks every day. I told her about the local CARD program at FAU and told her to call. I suggested that the local chapter of The Autism Society would be able to point her to places she might be able to seek help. She may take my advice, and she may continue to do nothing.
There are many kinds of awareness. We tend to focus on the degrees of awareness that involve society-at-large not understanding autism or the alarming rate at which the diagnoses numbers are increasing; or the legislators who aren’t sufficiently motivated to address the public policy concerns; or the undiagnosed. When these groups do nothing, it is frustrating. But there are a thousand things vying for their attention.
The saddest are those who know, and do nothing. There are a myriad of reasons; I’m sure the counter clerk barely makes it financially, and Florida’s social services are not known for actively seeking new clients. But we all will pay a price for this treatment deferred, first the schools, and then our support services for the disabled.
None will pay so dear a price as her son, whose future is losing brightness with every day that passes.
Jerry Trowbridge is Executive Producer/Technology for The Autism Channel
I recently attended the dramatic depiction of the story of Helen Keller also known as “The Miracle Worker”. It was there that I realized that Annie Sullivan, unbeknownst to her, acted as what I would consider to be the original pioneer of what we in the field of autism know today as “The S.U.C.C.E.S.S. Approach™” (TSA)
You may be familiar with the legacy of Anne Sullivan, who is better known as the teacher and companion of Helen Keller. A natural developmentalist Anne knew all about ‘the just right ingredients’ that were necessary to help Helen learn; REALLY learn!. Much like TSA, Anne’s approach was to meet Helen ‘where she was’ at all times. She saw each waking moment as a grand opportunity to teach, an otherwise un-teachable child, things like language, abstract concepts, and daily life skills. Moreover, Anne strategically used each moment she interfaced with Helen to facilitate Helen’s ability to connect with the people, physical environment, and emotions that surrounded Helen each day.
“like a little safe, locked… that no one can open. Perhaps there is a treasure inside.”
Helen Keller, although not formally diagnosed on the autism spectrum, presented at times similar to how children with autism do. She struggled to fully express herself, and to act on her world in a safe way. She also struggled to establish conventional relationships with peers and classmates, and even with her family, who despite their ignorance about Helen’s condition, loved Helen her deeply. Yet against the odds, the bright Helen Keller was fierce and determined in her quest to exist in the world. The very world that early on, served to antagonize and sabotage the spirited girl, even as attempted to meet her own basic needs.
In her own words Anne describes Helen as being “like a little safe, locked… that no one can open. Perhaps there is a treasure inside.” In this precise diary excerpt we see in Anne the budding awareness of what we know in 2013 to be true of EVERY child on the autism spectrum; there most certainly IS a treasure that warrants unlocking. A treasure lying within a safe that can, and will, be ‘opened’ with the just-right tools and the just right locksmiths…the ones who help make connections where connections first must happen – the brain.
Anne used many methods to elicit those connections, and insisted on first “reaching, and then teaching” young Helen. With this approach, a commensurate hallmark of TSA, Anne elicited in Helen true, meaningful and brisk progress. She helped Helen unlock her own safe and subsequently she helped unleash the communicative, functional, and intelligent version of Helen Keller the world now remembers.
Among Helen Keller’s array of accomplishments are writing, lecturing, and political advocacy for deaf/blind populations everywhere. For this we all have to thank the Keller Family, Helen herself, and of course the incomparable Miss Anne Sullivan whom I suspect at one time or another muttered to herself TSA’s famous tag line… “It Doesn’t Need to be This Hard…For Anyone.”
Awetism Productions produces Connect with S.U.C.C.E.S.S. seen on The Autism Channel
Kathleen and I have been participating in April’s Autism Awareness Month online for four years now and arguing that acceptance is key. Awareness alone is meaningless. We’ve collected and edited this year’s writings below, our post for the Autism Blogs Directory, and our personal pieces for our own blogs.
As it is almost the month of April-and all things, “awareness,” Kim and I thought that we would bring you all up to date on the goings on at the directory.
Firstly, we are looking for blog posts on Autism Awareness month. What do you think about it? Good, bad, indifferent? We’d love to know your thoughts. If you would like to write or share a guest post on the topic-email us. We would enjoy sharing your thoughts. You could also just leave us a link to your post in the comments section in the comments section at the Autism Blogs Directory.
It has been a long winter. Both Kim and I have dealt with a number of ups and downs that have taken up much of our time. This has kept us from doing as much as we have wanted to on the directory.
As you know, we have been trying to help promote “The Autism Channel”-an exciting new channel devoted entirely to the world of autism. (If you have a Roku box-the channel is free!) We have mentioned them a number of times on the directory, and have even co-written a blog post together for their web page. We really appreciate all of the work that they are doing! We’d love if you would go on over and give them a look-maybe even a” like” on their Facebook page.
Spring is almost here and Kim and I are feeling a bit more rejuvenated. The demands on our time have considerably lessened. Isn’t it funny how things work that way? One minute, everyone wants your attention-and the next, it’s almost as if you aren’t necessary anymore!
As it stands now, we are getting between ten and fifteen thousand hits at the directory a week! We have come a long way since we first started this over three years ago. We want a place where everyone is accepted and included-a place where we can share our ideas-where we can find commonality…community over cacophony.
All of you are helping to make this happen-and we thank you. As always, we are on the look out for new blogs and guest posts. Please email us if you want to be included-or know of a blog that should be. It is our goal to make the autism blogs directory one of the friendliest resources for autism and disability blogs on the internet and to assist The Autism Channel in becoming one of the most inclusive places, as well.
~”You can’t teach an old dogma new tricks”~ Dorothy Parker
We are a regular family…Like any family, we have good times and not so good…times when we are all together and times when the ups and downs of living our lives scatter us in a million different directions. But, even when separated, we are always connected. I adore this family of mine.
As a mother, I see and raise ALL of my children equally. They ALL have the same rules-the same expectations set upon them. “Do your best-and most importantly-be who you are.” I have four kids. Each with their own very different and unique personalities-four wonderful kids…not three kids on the spectrum and one neuro-typical child..nor three “auties” and one “normie”…or any other “ie” ending cutesy kind of word (what is it with that anyway?). Four kids-four human beings that we are doing our best to grow into adults. Labels aren’t really necessary to us-unless of course we need services. Then they are of the utmost importance. Autism, other than as an explanation (to my kids) as to why things are sometimes more difficult or different doesn’t really mean anything to my children. They are kids, they are part of a family and they are loved beyond words. This is what they know. Sometimes I wonder (when I look at the world) if I have made a mistake in guiding them to think this way.
A few weeks ago, I had a person tell me that I was the best advocate that they had ever met in all their years of working in special ed. I tried to dismiss this…in fact it made me really uncomfortable. Believe me, I am not “the best”…not even close. There are too many days when I know I could be doing more…could be doing better. Those days when I just want to hang out drinking coffee…(and I do). Or, when I just don’t feel like making a call..or showing up at school (so I don’t). Days where I would rather read a book than discuss anything to do with autism (so I go to the library). No, I see myself as a regular parent. Doing the things (mostly) that a parent is SUPPOSED to do. I don’t need a title-and I don’t need (or want) praise. What I would like is for my kids to get all that they need without having to intervene. I do not think that this is too much to ask.
No, if anyone deserves accolades it is my kids. They are caught in a system-both in the real world and on line that is constantly trying to box them in. My children are more than their diagnosis. Some of them struggle more than the others. Not all of my kids may be able to live fully independent lives (as adults.) That does not make them less valuable (as people) then the kids who will be able to. Nor does it make me a failure as a parent-someone from whom they need to be “liberated” from. That is just the way it is.
One of my kids wants to be a teacher. Unfortunately, his lack of pragmatic language, and really, just the way he learns has caused him to be dismissed by many educators (there have been some wonderful ones-but not enough), administrators-and whole bunch of other professions ending in “ors.” He simply doesn’t fit into the system. So it is easier to just ignore him. To pass him on to yet another system-only to be ignored there as well. *sigh* And another one bites the dust…
Autism awareness month is almost upon us-and I sit here thinking about how unaware people really are. Soon my Facebook wall will be flooded with all sorts of “My autistic kids are great!” All my kids are great-so you’re preaching to the choir. .. Or the activist type of “I don’t stim-but when I go out with my friends, we flap in public to bring attention to stimming!” Are you kidding me? That isn’t activism-it’s theater. My son owns his flappiness-thank you very much. It is his and it is real. I wish that people would stop co-opting his behaviors to try and make a point. How can I teach him that it is important that he “be who he is”-when there are people are pretending to be who they are not? I wish we would instead concentrate on what is really needed. Services, supports, education and inclusion for EVERYONE on the spectrum-regardless of where they are on that spectrum.
Autism isn’t a month: it is lifetime. It isn’t one set way-it is many ways. It isn’t a light bulb or a tee shirt. Autism is all different shapes and sizes and colors and religions. It is different abilities and disabilities. But the most important thing autism is…is people. All different kinds of people. We need to respect that-to acknowledge it-to accept it. I fear that nothing is going to change until we do.
So, now that April is almost upon us and we are inundated with all things “awareness”… I think that I will just continue doing what I have always done. That is, to raise my children to do their best-and more importantly-to be who they are. That is more than enough awareness for all of us…
As everyone in the online autism community is all too painfully aware, April is Autism Awareness Month. What that means to the vastly different people in autismland is, of course, vastly different.
For some parents, it means going blue in a variety of ways, posting information about autism, raising money for autism organizations, attending autism-related events. For other parents, it means boycotting various organizations. For some it means attending events but offering a message of hope and acceptance in the midst of the message of tragedy that brings in donations.
For some autistics, it means standing loudly and arguing against the awareness campaign, arguing that it as it is done by NTs trying to raise money for research for a cure, for treatments is HARMFUL to autistics. Awareness—there’s plenty of awareness that autistics are different and the rhetoric of pro-cure organizations who engage in hyperbolic speech about the tragedy that autism is for families is DAMAGING.
But, but…we’re just trying to help, the Autism organizations offer as a rejoinder, well-meaning parents insist. It’s the only thing we’ve got, they say (I’ve said)–it’s the ONLY THING here.
And they’re both right. So what do we do?
Non-profits run on donations, so raising money is what they do. And in order to maximize donations, selling autism as an innate neurological difference that needs different ways of educating doesn’t do the trick of maximizing the money coming into the coffers.
“By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.* ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered…*Comparison based on the prevalence statistics of the Child & Adolescent Health Measurement Initiative”
I can guarantee the sign, though, will still simply say “More children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.” The extended paragraph available on Autism Speaks’ website isn’t pithy, catchy, or terrifying enough to bring those dollars in, and the reality is that most of the people at the walks across the country don’t read the website.
So what does acceptance look like in the midst of the Awareness campaign? It looks like a lot of things.
It’s Paula Durbin-Westby’s Autism Acceptance Day and Month 2013 campaign, where she writes that, “Autism Acceptance Day is about embracing and cherishing autism and Autistic people. It is not about ‘just tolerating’ or putting up with us. It is also not about dismissing the very real difficulties that Autistic people face. Autism is clearly a disability as well as a difference.”
It’s different autistic bloggers with their take on what it means to be autistic and what April is like to them (see The Caffeinated Aspie and Drive Mom Crazy). It’s parents and allies offering positive stories to counter the tragic stories.
Acceptance means different things to different people, just as awareness does. Acceptance, to me, means letting that diversity of thoughts wash over me, taking into account other people’s perspectives and acknowledging that each of us sees the world through our own eyes, that the diversity of voices found on the autism blogs directory is good, desirable, necessary.
Acceptance…I don’t want my community to just be aware of autism. Autism Awareness? What about Autistic Awareness? When the month is run as a way to offer scary numbers and stereotypes, what have we really done? Why isn’t this a month about celebrating autistic individuals in their diversity and their inherent value?
Why isn’t this month about accepting that we are all different, we are all unique, and that we all have value? We all belong here, in our communities, in this world, and should have the support we need to achieve our potential?
It shouldn’t just be about Autism, either, but about all our beautiful minds. But that should be every day of every month, shouldn’t it? Acceptance isn’t one day, one month. It’s every day, every month, every year.
Acceptance should be of the totality of our experiences, the reality that some individuals have greater issues, greater challenges and face greater adversity. Acceptance of those individuals means not standing by and doing nothing, but working to create a society that embraces diversity and supports it by putting into place real safety nets, resources that help all individuals find meaningful work, whatever that looks like for them, creates the most autonomy possible and safeguards against abuses for those who need assistance
Acceptance is messy. It is noisy. It is different. It doesn’t mean doing nothing. It doesn’t mean merely tolerating others. Acceptance is listening, empathizing, embracing, forgiving and flexible.
It came as a shock to most people who watched the nightly news on a major network last night: new CDC-phone-survey figures show that one in 50 school-aged children now has an autism diagnosis.
To our audience who live with autism on a daily basis either as a parent, as one of the millions of caregivers worldwide or as someone on the spectrum themselves, it was just an acknowledgement of something they already know. To many, it also was fuel to reignite one of the many major core debates this community argues every day.
How much of the new figure is mere acknowledgement of previous unrecognized spectrum disorder; how much is the result of a new causative factor that appears to be balloning? What is that factor, and what’s being done to identify it? Everyone with an agenda went to the methodology page of the report and teased out the numbers that support their beliefs, and that only served to support our beliefs at The Autism Channel that there’s a missing piece in the autism media.
ABC News, like NBC and CBS, reported the story on its evening news, only as part of a general autism piece that included the new “grandfather” study. For the prevalence part of the story, ABC went to the CDC and asked them about regional differences, and then reported that they were told that autism is equally prevalent in all countries, only the methodology makes the United States and South Korea look particularly vulnerable. Apparently ABC didn’t know to ask about the Somalis in Sweden and Minnesota. If they had they might have gotten a more responsible answer: “We just don’t know.”
That is why we think the missing piece in autism media is a video news program where major stories like the ones reported this Wednesday evening can be given the time and attention that people in the community would like to see them receive. Our audience wants specific details that wouldn’t keep the attention of typical nightly news viewers. They know the players in the autism community and want reaction that would make little sense to people outside it. We want to provide that kind of coverage, and soon we will, when we launch The Autism Channel World News.
From the first day we conceived the Autism Channel, we knew a daily news program needed to be a major part of the program offering. It was just more difficult than we imagined to find the right host, and to develop the sources to provide the material to support it. We’ve now done that, and we only wish that we were in production now to cover those major stories. We know, of course that there will be tens of thousands more.
Our news anchor is Debra Clark. She’s the mother of two teenage boys with Asperger’s, was named Millennium Woman of the year in 2001, is seen on Southern California’s Fox 11 News as an advocate for adopting rescue dogs. She’s also on the spectrum; recently diagnosed with Asperger’s herself.
She will preside over a news organization committed to delivering current, complete coverage of autism and the autism community, free of the bias that comes with the need to support an agenda. We will not be afraid of saying “We don’t know.” Because our channel has taken no position on causation, treatment options or political action, we are free to report the news no matter whose ox it may gore.
We think that has been missing in this community for a long time, and we hope it can be one of the most important things our channel can add to the many voices in the autism community.
Kathleen and I have seen and read a lot in our years navigating autism-land, and one of the things that gets hidden away is the issue of aggression. We feel strongly that individuals struggling to communicate and lashing out with aggression and their families need support, need tools to help them resolve aggression issues in a healthy, productive way. Our community needs to build bridges to help these families, to help all of us find meaningful community. Together, Kathleen and I explore this hidden side and the need to suspend judgment while offering support — Kim
Physical aggression and violence. We rarely see it discussed by parents in the online autism community. Perhaps it is because this is a subject that isn’t easily spoken about-maybe because it is uncomfortable, or there is a stigma attached to it. Either way, it is a topic that appears to be taboo.
Far too often, we have seen someone try and talk about the difficulties involved in raising a child who is aggressive or self injurious, only to watch them be shot down by the people that they call community. “How can you talk about your child this way?” “One day they might read this-how do you think they will feel?!”…”It is obvious that you are a bad parent…or abusive..or don’t deserve children!” They are the kind of statements guaranteed to shut a discussion down. They serve no purpose other than to pass judgment-thus ending a conversation that needs to be had.
There is nothing that any one of us would not do to help our children. Nothing. Our love for them is unconditional. But what does someone do when that love is simply not enough? When that child, that person, that human being behaves in such a way that they are a danger to both themselves and those around them? Who do you reach out to? Where do you go for help?
Living with a child who is aggressive or violent is like walking on a tight rope. A constant balancing act of fear for and fear of your child-of desperation and of hope. Tipping heavily one way or another depending on the day. This week, we read two different posts by parents going through this right now. They love their children. They value them. They are being honest and open in their writing. We ask that you read them with this in mind. To respect their experience and to put aside your judgment or criticism and maybe try to walk in their shoes. If you can-offer some support, or helpful advice. This is something that very much needs to be spoken about-openly and honestly.
We ran across the first blog by accident, seeing a comment from an individual to a friend on Facebook about this very problem of putting out their reality, their fear, their desperate need for help and how that had been attacked by some. Fortunately, the outpouring of support, both emotional and financial, far outweighs the attacks. Kelli Stapleton is by all appearances and accounts a loving mother who desperately wants to help her beautiful daughter Issy gain control over her aggression, aggression that often manifests as physical assaults on her mother. Finally, after several years of looking for help, enduring attacks that resulted in a hospital stay recently for a closed head brain trauma, the family found a treatment center and their insurance paid for one month of care. One month isn’t enough to provide this family and Issy with the tools they need, and fighting the insurance company wasn’t doing any good, so Kelli took her plea to the online community.
As many of the comments attest, it is all too easy to lay blame and offer suggestions with a certainty bordering on arrogance. Kelli admits she needs help, that she needs training, that she’s traumatized by the abuse, and it is abuse, even if Issy would never intentionally hurt another.
It’s too easy to believe we would never be in the same situation and that if we were we could fix it easily. Sometimes, though, there’s no easy fix, no easy answers. We have to be honest enough to admit that, to suspend judgment and offer support.
We don’t like to do that, period: suspend judgment. It’s hard to do, maybe even impossible in some situations. I’m not sure, honestly, how you get past that, quiet that very loud part of your mind that can’t help but shout out, “yeah, but what about…”
Families like Issy’s shouldn’t go through this alone. They shouldn’t struggle for answers. They shouldn’t be denied help. Beautiful girls like Issy (and all of our children are beautiful) shouldn’t be locked into a cycle of lashing out because sensory issues and demands have overwhelmed her ability to respond without violence. She needs tools to help her communicate, to help her self-sooth, to help her grow into the young woman she’s meant to be, whoever that is.
This isn’t about seeking out a way to make our children neurotypical. It’s about seeking out ways to help them reach their potential and live happy lives of their own choosing.
It isn’t just mothers who are on the receiving end, though. Even veteran police officers can face violent meltdowns: Greg Lucas writes candidly about his family and their disabled son, who can be aggressive.
These are just two families, reaching out and sharing their stories. These are stories we often don’t want to hear, don’t want to believe could be true. We don’t want to believe it could happen to us, or in some cases, admit that it does.
Kathleen and I have both experienced aggressive behavior when our children were younger, and we acknowledge how lucky we are and our children are that this aggression stopped. We’re not vain or foolish enough to think we’ve got the answers to this problem, that it was our remarkable parenting skills that allowed that aggression to resolve. We did the best we could. We muddled through. We, I dare say, despaired at times. We ached for our children and we didn’t take the aggression personally. But the questioning, the soul searching, that doesn’t go away, nor does the second-guessing.
Sure, that’s a normal part of being a parent, but it’s a painful part. As you, in your adventures in the real world and online, run across families struggling, rather than leaving a judgmental, disparaging comment, why not simply let them know you care, that they are not alone, and that there are people who want to offer their support?
Hillary Clinton’s famous remark that “it takes a village to raise a child” triggered what’s become an ongoing national dialogue of sorts: debating the importance of people, communities, and institutions beyond the traditional household in helping a child to grow. By now, most families would probably agree that the truth lies somewhere in the middle: no two parents can reasonably be 100-percent responsible for a child’s upbringing, and on the other end of the continuum, even the kibbutzim stopped making kids live apart from their parents.
But the debate is an especially poignant one for families touched by autism. I would suppose that if asked whether it’s about the family or something much larger, their answer might be that the truth lies not in the middle, but somehow both extremes at once. Raising a child on the spectrum can require two devoted parents, one of whom is singularly devoted to caring for the child. It can also require a far-ranging support system of friends, relatives, medical professionals, and educators. It takes a family, a village, and everything in between. The demands—and the stakes—are that high.
Ann Palmer’s book, A Friend’s and Relative’s Guide to Supporting the Family with Autism takes a bold first step in integrating layers of support around the family touched by autism, inviting grandparents, relatives, co-workers, neighbors, and close friends to play a pivotal role in a child’s growth, whether through direct involvement or through greater understanding for the parents’ journey.
The book begins with an introduction to the autism spectrum and a brief history of how we got to this point, from the early work of Drs. Kanner and Asperger to the debunking of icy mothers or measles shots as culprits. Sure, this is old hat for the experienced parent or caregiver, but this is not a book for the experienced parent or caregiver. Ms. Palmer does us all a great service by explaining to the unacquainted what autism isn’t: we are not Rain Man, we do have emotions and feelings, and yes, we can even be successful.
The book stresses the stress that raising a child with autism can put on a marriage. As Ms. Palmer explains, it’s not as simple as parents being busier. The sleep deprivation that attends child care on the spectrum can lead to hormonal imbalances, bringing about depression and irritability in people who are already overextending themselves. And that’s before we even make it out the door in the morning, if we do at all: a mother may have to quit her job to stay at home, while her husband takes on a part-time job to supplement the household’s income. And with the costs associated with healthcare and support services, they’ll need every cent. If you aren’t living it already, you can see how hard it can get for two people who love each other to stay devoted to themselves while remaining devoted to a child who relies so extraordinarily on their love and hard work.
This is where the book shines, as it instructs and encourages relatives and friends to give what they can, whether it’s as simple as being a good listener for a venting mom, or as involved as providing respite care so that a child’s parents can be at their best for their family and themselves. As any good guide should, it matches what to do with what not to do. Not lost on Ms. Palmer is how conversations can be minefields with a spectrum family. We’ve all been told somewhere along the line to avoid matters of politics and religion. The latter is especially true here. The book specifically advises the reader to tread lightly on matters of faith. “God chose you to have a special child” may seem touching and encouraging until that mother, pushed to her wits’ end, questioning her faith as it is, sputters back that maybe he should have chosen someone else instead.
A Friend’s and Relative’s Guide to Supporting the Family with Autism takes a bold first step in integrating layers of support around the family touched by autism
From cover to cover, the book is full of heartfelt and useful advice. That being said, some of the advice may fall outside the book’s intended purview. On several occasions, the author speaks directly to issues facing “your child” or “your partner,” which wouldn’t apply to the friends and relatives in the title. Perhaps the intention is for parents to give the book a read before handing it off to a grandparent, neighbor, or another involved party. My only fear is that these passages for the parents themselves will fail to resonate with readers outside the household, and leave them liable to skimming.
And this is not a book to be skimmed. Ms. Palmer incorporates cited selections from relevant autism literature, as well as personal anecdotes from friends who, like her, have raised children on the spectrum. As a dedicated skimmer myself, I have a tendency to skip those block quotations set apart from the main narrative. Do not do that here! You would miss a wealth of terrific stories and insights.
A Friend’s and Relative’s Guide to Supporting the Family with Autism is subtitled “How Can I Help?” The first step, of course, would be the reading of this book and taking its lessons to heart. If you’re watching our channel, chances are that you have a maxed-out support system within the household, and a pretty solid circle of friends and relatives who are of invaluable assistance. Nevertheless, I’m sure you can think of people whom you’d like to inform or involve, or perhaps lend some guidance to a family member with good intentions. This is a book that can make your “village” of child development bigger and stronger. The question, then: is the book the gift, or is the gift the good feeling that will come with constructively volunteering one’s time and energy to people who need it so badly? Once again, it really is better to give.
If you are so inclined, you may purchase a copy of the book here.
It’s a goal of mine, albeit one much too deferred, to run the Chicago Marathon. As I was finishing up school in 2008, shedding the pounds I put on from years of cafeteria binges and late-night Chinese takeout, I resolved to run the marathon as a way to cap off an arduous stretch of personal improvement. But 2008 became 2010, which became 2012, and while I’ve run hundreds and hundreds of miles between then and now, I haven’t run the 26.2 I wanted to. So what’s stopping me? All kinds of people out there run this thing every year. It’s not just the best in the world out there. All I need to do is train, sign up, and give it my best shot. But I haven’t. What is it that I’m afraid of?
This winds up being a parallel to the job hunt for a lot of folks on the spectrum. That includes me. I’ve struggled with the metaphorical starting line almost as much as the real one. Prior to coming on board here, I stayed in a bubble of self-employment that was comfortable to my situation, but hardly lucrative. When I was finally forced to send out flurries of résumés, many came back with rejection letters, more came back unanswered, and I wondered why I bothered at all. So I didn’t anymore. It was a career setback that begat personal setbacks, that in turn begat further personal setbacks, and this all would’ve kept snowballing into a very unpleasant situation had I not had the amazing fortune to arrive before you here and put forth the hard work to stay here.
In a way, people with Asperger’s often approach searching for employment as something as insurmountable as a marathon. Just like how the weather on an autumn race day can land anywhere between sweltering humidity and bone-chilling rain, all the planning and plotting out can’t prepare you for every condition you’ll face in an interview. And when you’re fixated on doing everything right and doing it best, so much that you’re scared to death of any surprises along the way, it’s hard to come to terms with putting yourself out there in a pack of competitors and judging yourself against them — to say nothing of the world-class Kenyans at the front. We’re so afraid to fail that we don’t give ourselves the chance to fail. And that, to be a bit trite, is the real failure.
Barbara Bissonnette is a career coach who specializes in assisting people with Asperger’s, and with her upcoming book, The Complete Guide to Getting a Job for People with Asperger’s Syndrome, she hopes to help people with the hardest part of career development: getting a career in the first place.
The book explores a number of key issues that give particular trouble to job candidates on the spectrum, and offers a number of ways to navigate them. Some, like the importance of appearance, seem obvious, but still provide a closer look into all the ways that one has to be “switched on” beyond just dressing for success. Other topics are not as self-evident, and are full of tremendous insight. For instance, people with Asperger’s are notoriously bad liars, and struggle with the nuances of selling oneself. The subtle fluffing that goes into any effective résumé, or the euphemisms and buzzwords that make up the language of the office, conflict with our literal nature and fear of being tarred and feathered for breaking the rules. Fortunately, the book devotes time to writing a résumé in such a way as to be an effective sales tool. With Ms. Bissonnette’s guidance, a résumé can be honest and persuasive in detailing its writer’s accomplishments, while—and this is so key—being well-organized.
To me, much of career coaching, life coaching, sport coaching, or any other mentoring position seems to consist of knowing whether a moment calls for a pat on the back or the equally important kick in the ass. And with all due respect to all parties involved, be forewarned: this is a time for sore rear ends. Procuring a job in today’s climate is stressful, competitive, and hard. It’s not easy for anyone, but when you have Asperger’s, almost any prospective job opening will require you to go “behind enemy lines,” so to speak, and be in a world where, simply put, you are not like your peers or superiors. People with Asperger’s have a lot to offer to employers and to the world. If they didn’t, the author would not have made it her job to bring those talents forth. But this isn’t our world, and Ms. Bissonnette has no warm and fuzzy feelings about embracing every last one of our idiosyncrasies and peccadilloes. As much as we hate it, there are rules to be followed if we’re to get past the gatekeepers.
If we can revisit my marathon analogy, another important lesson this book teaches is one of pragmatism: sometimes finding a job isn’t about coming in first place, but simply making it to the finish line. Ms. Bissonnette encourages readers to put away the “dream jobs” for which they could be woefully unsuited, or to forget about jobs that don’t exist. While Asperger’s lends itself to intense interest in a particular subject, your given subject may not be a lucrative one. Maybe you aren’t able to monetize your encyclopedic knowledge of baseball statistics or model trains or 1980s television theme songs right now, or ever, but the wiring that got you to that point can be rewired for other pursuits. The book contains checklists and personal inventories that will guide readers toward the right jobs.
The Complete Guide to Getting a Job for People with Asperger’s Syndrome is an essential resource. There’s no other way to say it. Finding employment is daunting for people on the spectrum, and the numbers bear that out, but a steady income and the feeling of contribution will go a long way in solidifying one’s quality of life. Even though the numbers say it’s a longshot, I’d like to see every reader of this book—and there ought to be many of you—find a rewarding and meaningful career. But I’ll warn you right now, before you get any ideas: you don’t want my job. There’s a lot of Asperger’s to confront and overcome here. When I’m staring down deadlines, or psyching myself out for the pre-show phone calls that I’m so irrationally afraid to bother people with, or having to be mindful of every lapse in eye contact and every placeholding “y’know,” I just think to myself “I have no business doing this.” But the name of the show, after all, is I Am Autistic. If I could do this show without a single hitch, they never would’ve given me the gig.
If you are so inclined, you may purchase a copy of the book here.