The Hidden Side: Aggressive Behavior and Families in Need

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

 

Photo Credit @RCGates

From Kathleen

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.


From Kim

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?


The Autism Bookshelf: How Can I Help?

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 supplementBookShelf240 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.


Daniel Heinlein is the host of I Am Autistic, the flagship show on The Autism Channel.

The Autism Bookshelf: The Complete Guide to Getting a Job for People with Asperger’s Syndrome

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.