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Voices: Susan Boyle

  • Posted on December 11, 2013 at 10:00 AM

“Celebrity” autism diagnoses aren’t terribly uncommon. Of course, in most “celebrity” diagnoses I’ve seen, it’s the child of a celebrity being diagnosed with autism and the celebrity using their fame to raise awareness and drive for a cure. It’s a relief, then, to see another voice take on the issue from an entirely different celebrity perspective.

Here are some quotes from an interview with Susan Boyle:

“It was the wrong diagnosis when I was a kid,” she says. “I was told I had brain damage. I always knew it was an unfair label. Now I have a clearer understanding of what’s wrong and I feel relieved and a bit more relaxed about myself.”

Unfortunately, this is a common experience for women with Asperger’s. For several reasons, it’s especially difficult to get an accurate diagnosis of autism when you’re a girl. What’s even more unfortunate is that this is still true. We’re making progress, but there’s still an assumption that the autism spectrum is primarily a “place” for boys.

“I am not strong on my own,” she admits. “When I have the support of people around me I am fine. I have a great team.”

There is an assumption that, because people on the autism spectrum have trouble with socialization, they have a lesser need for friends, family, love, fellowship, and all that goes with it. This statement is in direct challenge to that assumption and is consistent with the experience of many people on the spectrum.

“I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do.”

I would hope this is true, but considering the lingering prejudice against people with neurological differences, I fear it will not be.

Aggression: What It All Means

  • Posted on April 12, 2013 at 10:00 AM

Kathleen and Kim wrote a post for The Autism Channel about aggression. I’ve written posts about Ben, Alex, and Willy. Now, let’s think about this a bit more.

Aggressive behaviors happen. They’re easy to judge, but difficult to understand and redirect when you’re in the midst of them. They’re often associated with either communicative deficits or puberty or both when in association with autism, at least that’s what I’m told by the professionals.

The way I look at it with my three boys—one with “easily” applicable communicative purpose, one with (maybe) a baffling purpose, and one who directs it inward instead of outward—I think aggressive behaviors (or the lack thereof) are a lot more complicated than the literature and professionals like to make them seem. It’s definitely more complicated than the generic (i.e., not autism-specific) professionals like to claim—CPS being a prime example.

I don’t have the answers. I have yet to meet anyone who does—after all, if I had, then aggression still wouldn’t be an issue for us. What I do know is that aggression (on the part of a child with special needs) isn’t the result of bad parenting, uncompassionate caregivers, or a lack of discipline. There’s nothing simple about it. There’s nothing shameful about it either and I refuse to let anyone make me feel as if there is. I assure you, we’ve tried all the “normal” stuff. We’ve tried a lot of abnormal stuff, too. We’ve discussed the issue with highly qualified staff familiar with our children and highly qualified professionals unfamiliar with our children. We’re still trying, we haven’t given up, but the “answer” hasn’t made itself apparent, yet.

I don’t know what the answer is, but I can tell you some of things the answer is not. The answer is NOT that the child is “bad.” The answer is NOT that we’re not trying hard enough. The answer is NOT one-size-fits all. The answer is NOT to cure autism. After all, aggression exists throughout our society and manifests in children all across the spectrum of needs.

Where there is aggression: Children need support. Adults need support. Their families need support. We all need compassion, understanding, and encouragement.

A little empathy goes a long way.

Embracing Chaos on Fundrazr

  • Posted on August 29, 2012 at 8:00 AM

So, after years of people telling me I need to turn the story of raising my children into a book, I’m finally doing it. I even have a publisher. But the publishing company I’m partnered with (and, with Influence Publishing, it is very much a partnership) cannot provide me with an advance. Julie Salisbury has, however, provided me with training on how to raise funds to help support my publishing efforts.

I now have a campaign on Fundrazr to help me support my family while I divert working time to writing my book. If you are financially-able, please support my cause with a donation. If you aren’t, you can still support my cause by spreading the word on the social media sites of your choice and leaving a comment on my campaign page, which raises my status on Fundrazr. Every little bit helps!

In the meantime, check out my YouTube video to learn what this is all about.

(And yes, that's me speaking!)

Thriving and Flying

  • Posted on March 30, 2012 at 8:00 AM

I feel kind of like a baby bird pushed out of the nest by its mother, forced to fly and fend for itself.  The analogy doesn’t quite fit—I’m not a baby and this isn’t the first time I’ve been on my own—but the feeling lingers despite the obvious discrepancies.

Last week I took Alex and Ben to the Feeding Clinic.  Brief recap:  For years these two little ones have struggled with below-the-charts growth, severely limited diets, inadequate nutrition, and the threat of “failure to thrive” diagnoses.  We took them to the Feeding Clinic to “fix” this, and apparently we’ve succeeded.

My boys are hardly weighty fellows.  They’re on the growth charts now, but the 90/10 trajectory (in Alex’s case) persists—that’s 90th percentile for height and 10th percentile for weight, or tall and skinny in lay terms.  Ben isn’t quite so tall, but he’s on the skinny side.

We’ve done all we can.  They’ve maintained their own growth trajectory, we’ve succeeded in introducing needed nutritional supplements (meaning they actually consume them), and they’re all-around healthy.

All good things.

But now the visits to the Feeding Clinic are at an end.  They’re not needed any more.  The great, supportive team that has helped us so much and have supported us so well, have succeeded and are no longer needed.  And I know it’s time.  It’s just that…

I’m going to miss them.

May I Have Your Attention, Please?

  • Posted on December 16, 2011 at 8:00 AM

There are many ways to be an advocate. There are many causes we can cling to and many ways we can do it. I tend to be a broad scope kind of advocate. There are too many issues and too many grievances for me to hunker down and focus on one. I’m not really the go-to-gal for anything. Geez, I can’t even stick wholly and purely to autism.

There’s nothing wrong with that.

But there’s also nothing wrong with having a focus, a cause, a very real problem you want to shout about from the rooftops.

Sue is a dear friend with a real problem. Her daughter is the victim of bullying, and has had a hard time coming to grips with all the ramifications of her experiences. Her daughter is also a child with autism, particularly Asperger’s. As a girl, she was misdiagnosed and improperly “treated” for a long time. Sue is a proud mom of her autistic daughter, and all for autism pride and acceptance and respect and all those good things. But she’s focused on bully, because that issue has had such a dramatic and negative impact on her family; and she’s not feeling the love and support her and her daughter need.

There’s nothing wrong with my approach to advocacy. But there’s nothing wrong with hers, either. She supports the other issues involved with autism. But her focus is on bullying. There’s room in this community for both kinds of advocates, and for all the kinds of advocates in between. We should support each other. Sue and I are proof that we can support each other.

Believe me, bullying isn’t a topic you should ignore. Bullying hurts. It hurts the victim. It hurts the witnesses. It hurts the bullies, too. I have no statistics to back me up in this, because, after all, neither statistics nor bullying are my areas of expertise, but I feel 100% confident that your child is going to be bullied, be the one doing the bullying, or witness bullying. Both my two bigger boys, one who is “cool” in all the typical senses of the word and one who is “cool” in the unique way that he is and in the awesome way that he’s been embraced by his peers, have witnessed bullying. Both boys have had bullying touch their lives. My “cool” kid, the one who I’d have least worried about being the subject of bullying, at least at school, has actually been the one to experience it the most. He’s had friends who were bullies, he’s been bullied, and he’s see those he loves being bullied by others—sometimes by his own friends. Willy, who is lucky to be embraced by his peers as a “different kind of cool,” has seen his friends bullied and has been hurt by what he saw. I’m proud to say that both my boys have spoken out against bullying.

I’m proud of my two boys who go out of their way to condemn bullying. But they got that way, in part, because of what I’ve shared with them. A lot of what I’ve shared with them, especially lately, has come through the information, links, and other tidbits that Sue has shared with me. Simply said, Sue is helping me raise better children. I’m grateful for that, and I’m proud to know her and call her friend. It saddens me that, as supportive as I know this community can be, she’s not getting the kind of support and encouragement she needs. She’s doing good work. Please, check her out, support her efforts, and take a few moments out your day to spread the message that bullying is not okay, that it hurts, that the damage can be lasting and painful. Stand up against bullying. It doesn’t have to be an all or nothing proposition. You don’t have to make bullying your one cause. But, please do something to let those people who’ve been the victims of bullying know that you care. Do something to stop a bully from thinking their behavior is acceptable. Just do something.

Getting the Support You Need

  • Posted on August 7, 2011 at 4:42 AM

As parents, especially parents of children with autism, we need support from others to get through the big and little crises of our lives. There’s nothing wrong with that. Actually getting that support, however, can be a challenge.

For some, the problem seems to be an unwillingness to ask. For others, the problem seems to be a lack of sources for support. There are many sources for support available, but accessing any of them requires effort. Whether it’s asking for help from those in your support system or building the support system that will meet your needs, it’s not easy. But that doesn’t make it impossible.

The first thing we need to do is to change the way we look at support. Communities exist to provide support. There’s no shame in accessing that support. Whether the potential source is personal or societal, ask for the support you need. While there are exceptions, usually you won’t get it unless you ask.

The second thing we need to do is find out what is available. Resources will differ depending on the community in which you life and the support system you have built. Ask around. There may be established programs that provide assistance you’re unaware of. A good place to start is your local First Call program (if such a program exists) or your local disabilities office. Teachers, social workers, and volunteers may also have leads on possible sources of support. Again, they may not realize you need to know unless you ask. Don’t assume programs that provide the support you need don’t already exist simply because nobody has mentioned them. Ask.

The third thing we need to do is build on what we already have. You have family, friends, co-workers, neighbors. Reach through them to reach out to others. You do this by letting people know what you need and asking them if they know anyone who might be able to help. In professional circles, this is called networking, but the benefits of networking are not limited to professional circles. You might be surprised at what you find. Churches, clubs, and other organizations are often excellent resources. They might not have established programs that meet your needs, but that doesn’t mean they’re not willing to pitch in however they can.

The last thing we need to consider is building the programs we need. Government organizations should not be our only, or even our primary, recourse for changing the levels of support available. Most programs start with charitable organizations. They’re started by people with passion. If you can be that person with passion, you can probably find a charitable organization to help you help yourself and others. Creating a program from scratch isn’t easy. Planning, fund raising, and program implementation are time-consuming. When you’re already stretched so thin you need to ask for help and build a program from scratch, it may seem an insurmountable responsibility. But this is how things start. Reach out to those who can offer support on a more temporary basis while you build the social infrastructure to create lasting support.

None of this is easy, but the only way to increase the support that is available is to reach out and build up.

False Blame

  • Posted on July 31, 2011 at 5:16 AM

This post is in response to Rachel’s recent post at Journeys With Autism about taking care when expressing our experiences of disability. Her post was, in turn, a response to another blogger.

While I’m not going to try to touch on everything Rachel covered (It’s a good post, and I highly recommend you check it out.) there’s a particular passage that got me thinking about an issue that’s been a concern of mine for a long time.

It all started with this:

My concerns on this score only increase when Ms. Baird launches into some of the most fear-inducing words about autism that I have ever read:

Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.

I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.

I highly recommend reading Rachel’s post, because she makes some very important points that are specific to autism, and apply more generally to discourse on disabilities. However, in this post, I would like to address this from a perspective beyond autism and beyond disability. Simply put, what Ms. Baird is experiencing within the context of the quoted passage has nothing to do, specifically, with autism.

For those immersed in the world of parenting an autistic child, this may seem counterintuitive. After all, those of us with autistic children, especially children with “severe” autism, know it’s almost always challenging, often exhausting, and very, very stressful. But that’s just it. It’s not autism that wears down families, severs familial bonds, or creates blame and guilt. It’s stress. More specifically, it’s our poor or inadequate reactions to stress that have these consequences.

Stop and think about it for a moment. If autism were the cause, then we’d only be seeing these effects in families with autism. But that’s not the case. Nor is it the case that we only see these effects in families with disabled children. No. We see these effects in families that are impacted by a wide variety of stressors, and currently one of the most notable stressors is finances. How many parents have killed their children or their whole families in reaction to financial crises? I don’t know about you, but I’ve lost count. How many more succumb to abusive behaviors? How many people have walked away from their marriages and their children because they lost their jobs, because they couldn’t pay their bills, because they were going to lose their home? Is anyone even counting?

Sure, some families with autistic children experience exactly what Ms. Baird described. But so do families with no autistic children. Autism is not the cause. We have a tendency, as parents of children with autism, to falsely blame autism for our struggles and our challenges. We blame autism for experiences that we think are, at least to some degree, exclusive to ourselves and our “kind,” because we get so caught up in autism that we fail to see our similarities to others outside of ourselves.

People can, and frequently do, react badly to stress. These reactions are to stress, or the experience of being stressed. The cause of that stress is, for the most part, irrelevant when the issue is our reactions to that stress. There are many causes, and there are many reactions; but the causes do NOT dictate the reactions.

What is the difference between the mother who kills her child because her child is autistic and the father who kills his child because he’s broke? Certainly the first evokes great concerns about the perception of autism and disability in this country; certainly the later evokes great concerns about the psychological effects of our economic downturn. But, despite these differences, both are tragedies; both involve the deaths of innocent children at the hands of their stressed-out parents; both are bad reactions to stress.

I’m not a psychologist, a sociologist or an anthropologist. I cannot tell you how different or unusual this reaction is from reactions to stress over hundreds or thousands of years of human society. I’m just a mom. I’m a mom who looks at my kids and is horrified at the thought of a parent willfully killing their own children. It’s outrageous. It’s horrifying. And it’s happening. It’s not just happening to autistic kids. It’s not just happening to kids that are disabled or sick. The phenomenon is bigger than a single stressor. It’s bigger than autism. It’s bigger than disability. I see this and I can’t help but think that something has gone very, very wrong. For all I know this has always happened. I don’t know. But, even if this is some sort of incomprehensible “normal,” it’s wrong. It’s just wrong.

When I brought this up in a briefer form on Rachel’s post, she evoked the word “support.” For those of us within the autism community, support is a major buzzword. It’s a major buzzword in the greater disability community as well. My question is this: why isn’t support a major buzzword in the community at large? The concept of support is not exclusive to disability. We all need support. We all need community support; in fact, that’s the reason why communities exist.

Families disintegrate due to stress, or rather due to poor reactions to stress. The nature of the stress is not what needs to be fixed. There are too many stressors in the world to fix them all. If it wasn’t autism, it could be poor finances; if it wasn’t finances, it could be something else. The cause of the stressor isn’t the problem. The problem is how we respond to the stress. If people get the support they need, I believe responses would improve—again, I’m neither a sociologist nor a psychologist, so my statement is intuitive not factual. My point is that blaming the stressor does not get you the support you need. You cannot choose whether or not your child has autism. You cannot choose whether or not you’re laid off. You can choose how you respond. You can choose to let your family disintegrate. You can choose to take them out with a shotgun. You can also choose to cope, to get support, to reach out, to build community, to help and be helped.

That choice has nothing to do with autism. You can lay the blame for all your woes at autism’s anthropomorphized feet if you’d like, but it won’t do you or anyone else any good. How you deal with the stressors in your life is your choice and your responsibility. Choose wisely.