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Confidentiality

19 Sep

As I discussed in an earlier post, I was attacked for my use of my brothers name and picture when sharing about his diagnosis on my blog. Confidentiality is a hot topic for parents, and people on the spectrum. And by “hot topic” I mean scorching, blazing, on fire!

Here’s the breakdown of what I have gathered from both sides of the coin (click to enlarge):

As for me, it’s not that I don’t see the benefits of keeping things confidential; I do. And it’s not that I completely agree with everything Pro-Openness people think or do;  I don’t. But, I obviously lean to the Pro-Openness side. So after the heat I took for it from people on Tumblr, I reached out to a woman who writes a weekly column (for a big newspaper) about her experiences with an autistic son. She has faced backlash for publishing his photo along with her articles a few times, so I knew she would have some words of wisdom on the topic. She wrote me back right away, and gave kind words of encouragement. One theme in her response was that she has come to accept that she will not please everyone, and she doesn’t strive to.

It’s true. Anything that anyone says/writes/does  is up for debate. But, just because that’s the case does not mean I need to change my story, or the delivery of my story, to fit other people’s molds.

In the end, I think each person has the right to make their own decisions about confidentiality. So, if my stance doesn’t align with yours, I hope you’re able to refrain from judgment, ridicule, or condemnation. And, if your stance doesn’t align with mine, I promise to do the same.

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Siblings- Part 1

6 Aug

In the July/August edition of The Therapist magazine, Dr. Ira Heilveil wrote about the role of a Marriage and Family Therapist in the lives of those affected by autism. He discussed the ways each relationship within the family unit might be impacted.

Dr. Heilveil says siblings may:

-Suffer real or perceived withdrawal of attention from parents

-Engage in maladaptive or excessive “good” behaviors

-Fear that autism is contagious

-Fear that their own children will someday be autistic

-Grieve the brother or sister they wanted to have

-Feel ashamed that their sibling is not like the siblings their friends have

This is one of the many layers within the autism onion: siblings.

For me, there is fear for the future. My parents won’t be around forever, so what then? How will life be for me as a care-taker someday? There is an intense investment in my brother’s progress. The better he does now, the better off things will be then. There is pain, sadness, heartbreak. There is a sense of responsibility; I’m his oldest sibling. I’m trained in ABA. There is confusion. There’s anger when people don’t do right by him. Then there’s anger when his disability overshadows the needs of other family members.  There’s disappointment when others fail him. There’s frustration that I can’t do more to help him. Then there’s frustration when life revolves around him at the expense of other people. There’s pride in his accomplishments. There’s compassion and sensitivity. There’s hope. There’s joy in his affections. There’s just so many things. It’s a complex, tangled ball of emotions.

Elvis and Autism

23 Jul

I was just hanging out at home, relaxing on the couch. The Encore channel was on in the background showing an Elvis and Mary Tyler Moore movie, Change of Habit. When all of a sudden, I heard the key word “autistic”.

Elvis plays a doctor in this movie, with Mary Tyler Moore as his assistant. A little girl is brought in to treat her deafness. After hearing of the little girl’s history of abandonment, Mary’s character suggests the girl is not deaf, but actually autistic. She states: “Sometimes when a child is rejected very early in life they crawl inside themselves and shut out the whole world, as if they’re trying to punish the rest of us, along with themselves.”

After trying to turn the girl’s head towards her, she goes on to say, “You see how she resists any physical contact? It’s typical of autistic frustration.”

Elvis suggests a new treatment, “Rage reduction” while Mary asserts, “I’d rather try patience and love.”

After failing to build compliance with the patient on a shape sorting task, Elvis steps in and performs “rage reduction”; a technique in which he holds the girl while she screams, and cries, and flails to try to get away. He scoops her up and says, “You gotta learn to start lovin’ people. I’m gonna hold you ‘till you get rid of all your hate. Get as mad as you can. You can start to give love and take love.”

As she continues to tantrum, Elvis tells her, “I love you, Amanda. Get as mad as you can get. Show us how mad you can get. Fight! You can do better than that for someone that loves you. That’s a girl! Get mad. We love you.”

After enduring several hours of this procedure, she eventually speaks her first word “mad” and is magically cured!! She becomes compliant, giving perfect eye contact, responds to her name, and even enjoys physical contact with others. Her “hatred” is gone.

So…what to make of all this…

Well for starters, it’s an amazing snapshot of the myths and misconceptions people had about autism in the late 1960s. People were so misinformed, and autism was so misunderstood. The disorder was blamed on neglectful or unloving parents. The treatment revolved around freeing the frustrated child of their hate and anger. And this movie suggests a cure exists. Just hold your child until they can fight no more, and all of the sudden they will be happy and compliant children!

For me, watching it was equally astonishing and interesting, not to mention kind of humorous. (Could people have really believed this stuff?!) How awful for parent’s raising autistic children in this era! It was uncommon and un-researched. How judged parents must have felt. How many ethical dilemmas they must have faced when deciding on treatment for their kids. It’s shocking how we used to think about autism. It’s amazing how far we’ve come in understanding this disorder. While at the same time, I realize how much we still don’t know.

Welcome!

23 Jul

Hey there. Welcome.

Well, for those who know me, you know autism is a huge part of my life. It’s not only part of my career, but also part of my family. Autism has had far reaching effects on pretty much every area of my life, in some way or another. So I decided to start a blog about my experience with it.

See, autism is complex. Some might even say, it has layers…like an onion. In fact, in talking with someone the other week, she used the “autism onion” metaphor. And it hit me…THAT was my blog title! So thanks to that special person; you know who you are. You’ve given my blog a name. 🙂

So, this blog is my space to write silly stories, revelations, complaints, frustrations, heart-aches, and anything else that comes to mind. I’m a big sister… I’m a therapist… I’m a soon-to-be BCBA. And, this is my attempt at peeling back the hundreds of layers of autism.

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