Category

Autism

Clarifying

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I would like to clarify a few things about my last post. Now that I’ve actually read what I wrote, heard some good feedback, and had a great conversation with my dad about it, I’m have a bit more clarity.

I’m going to start with an example. Examples and metaphors and comparisons help me fully understand things. So: imagine that, when I was born, there was some way of knowing that I was going to be a highly-sensitive introvert. Would I have wanted doctors to tell my parents, “eh, just let her be, it’s who she is and whatever that brings with it, she’ll deal with, it’s just her”? NO. What I would want them to say is, “Your daughter is a highly-sensitive introvert. Let’s give her support around managing her sensitivities and intense emotions, help her with her anxieties and obsessions, and capitalize on how this makes her who she is.” If those same doctors had said, “Your daughter is going to be a highly-sensitive introvert! Let’s help her recover from this so that she never feels extreme emotions and doesn’t have anxieties and quirks” then I would’ve lost who I am at my core. I would have lost my love for nature, my mixing of senses, my tearing up at a sunset or a song, my intuition around people, my understanding of the kids I work with…..it goes on and on.

That is what I was trying to get at in my last post. Do I want doctors to say, “Your child is autistic. Okay, good luck with that”? Of course not! I’m a speech-language pathologist. I believe in therapies, of all forms. I believe in therapies in all forms for all individuals, neurotypical or autistic. I believe in early intervention, I believe in getting children all the supports they need as early as possible.

I believe in helping them to be functional in their lives. Being as independent as possible. Being safe. Forming friendships. Connecting with others. Learning.

But I don’t believe in trying to extinguish their personal interests, their stims, their scripts, their quirks. That’s their core, that’s who they are. If we try to remove those (harmless) aspects of them, we remove their essence.

So when it comes to treating autistic individuals, there’s a difference between removing their core being, and helping them reach their full potential and quality of life.

And, as my dad pointed out, it’s also an issue of semantics. The term “recovery” is just a dangerous term here. It indicates that the individual is afflicted with something that needs to be fully gone. So, I’m particularly sensitive to the idea of helping kids “recover” from autism. Again, it’s an and, not a but. I’m sensitive to the term “recovery” from autism. And, I believe we should do everything in our power to support them to be the best they can be, as they are.

Babbles about autism

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Warning: this is not going to be coherent. (Although, if you’ve read any of my posts, that won’t surprise you). This is a stream of consciousness, not edited, not thought-out, not planned. Just thoughts spewing out.

I was told about a woman who wrote a book called Autism: Pathways to Recovery. I was immediately apprehensive, because anytime the words “autism” and “recovery” are in the same sentence, my heart starts to beat a little bit faster. I glanced through the book, and I do like some of this woman’s thoughts. Being the daughter of a well-known, truly incredible (not just saying that….really) naturopathic/homeopathic doctor, who has helped countless people with various physical and mental conditions, by treating the whole person, the underlying causes, the deeper issues within the system, I do firmly believe in naturopathy. I also do believe that autism is a genetic/environmental interaction. Maybe some people are wired for autism and don’t present as autistic, maybe some are wired for autism and with toxins and environmental substances and issues, they do present with autistic behaviors. I think that’s part of it, and I also think there’s part we don’t know, and I also think that it’s more important to help promote autism acceptance and support rather than harping on a specific gene that may or may not cause autism. HOWEVER. I do not believe that every person’s autism is caused by environmental toxins. I do not believe that autism is something that can all of a sudden “disappear” with the right treatment. Yes, I think that there are some people (because I know of some) who do have a better quality of life with diet modifications, reducing inflammation, healing the digestive system, and treating various bacterial overgrowths. But doesn’t anyone?! I mean – my quality of life is better now that my digestive system is healing. Most people feel better when they stop eating refined sugars and genetically modified foods. So, yes, of course, autistic individuals will also have some improvement in their quality of life when those modifications are made. But there is a BIG difference between improving quality of life, and recovering from a disease. Autism is not a disease.

I know some may disagree. I know some see autistic individuals, particularly those who are completely unable to care for themselves, who can’t speak, struggle to communicate, hurt themselves, and think that autism is an awful affliction. And, I understand that. And, I understand that we need to do everything we can to make their lives as full of life as possible, whatever that means for each individual.

But it’s so dangerous when we start talking about autism as a disease, as something we need to recover from. And that’s what this author does. Over and over, she promises recovery, she promises that children will get the chance to get better, to recover, to be free from this condition. And that’s not fair to all of the autistic individuals out there. Autism is a part of them. It’s not a disease. We can’t equate autism to cancer, to depression, to Alzheimer’s. I think of my students with autism. Their lives are hard. I’m not denying that. These issues are not mutually exclusive. It’s not a “but”, it’s an “and”. It is hard to be autistic. AND, it’s not something we need to “save” our kids from. Autism is a part of who they are – if we took away the autism from them, I don’t know who they would be. They’d lose their personality, their characteristics, their amazing quirks and brilliant insights. They wouldn’t be themselves.

I stopped reading when the author wrote, “I will not give up until every child is given the chance to recover; until all of the
pieces of the puzzle fit together, and this chronic condition no longer threatens the next generation.” I was then fuming, and immediately started typing this blog post.

I have no doubt that this author is a brilliant doctor. I firmly believe, even without knowing her, that she means well. That she works hard. That she comes from a place of caring. That she has good insights. That she’s done years of research. That her research is substantiated. That she is a research-based doctor, not a clinical doctor. That that makes a difference.

But there’s danger in only seeing her side.

(I’m not even going back and re-reading what I wrote, because it’s likely so disorganized that it makes no sense, and I probably omitted key points and facts and I will likely get a lot of flack for it, but that’s okay, so here we go, posting it now. Please share your thoughts – I am certainly no expert, nor am I coherently expressing my thoughts, and I would love to hear what you think, whether you angrily disagree with what I wrote or whether some of it resonated with you. I’m all about the stream of consciousness)

 

Progress Reports.

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It’s Progress Report time, which, for a special education school, means reporting on the progress of each benchmark within each goal, for each student. For me, it’s reporting on their progress towards their Receptive/Expressive Language (speech/language) goal.

And while doing that, I’ve realized how much of our data is confounded. I mean, obviously. There are a million different factors and that goes with the job, with the therapy. But I have so many students who live very much in their heads. Some who can even express what it’s like to be inside their minds and their bodies, who can explain, whether it’s through a script or a drawing, how their brain works.

And it isn’t easy for them to come out of their heads. And it isn’t easy for them to learn in the way that we teach. Easier when we modify, easier when we cater toward their needs and personalities, but still not easy.

So when I report that a student did not achieve a benchmark, did not obtain x/y/z skills, I’m struggling with it. Because I want to put in bold underneath:

Disclaimers:
-Student may know way more than s/he is able to show us.
-Student’s performance varies based on his/her internal state and sensory regulation.

Now I don’t know how much the Dept. of Ed. would like that (sarcasm) so I don’t do that. But I want the parents of my students to understand. That it’s not necessarily that their child can’t do something. Yes, there are things they can’t do, can’t understand, can’t comprehend. But I truly, firmly, strongly believe that more often than not? It’s that the world around them is not shaped in a way where they can SHOW what they know. Where they can access the knowledge that’s being taught. Where they can truly express their knowledge, thoughts, and comprehension.

I just want parents to know that. That I think their kids, all of them, are brilliant. That I understand them. A lot. On a nonverbal way, on that I-understand-him-through-my-soul way. That no matter what my Progress Report says, no matter how many benchmarks are or are not achieved, I will not give up. I will not think their child is incapable, not think that they have plateaued in development, not think that they do not or cannot understand something. I will not stop trying to meet them on their level, and I will not stop trying to teach in a way that they get. And if that means scripting back and forth with a student for 20 minutes so that I can explain a concept in a way that they understand? You bet I’ll do it.

Your kids are brilliant. All of them.

Please know that I know that.

Lack of understanding or something else?

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I love Social Thinking. I’m all for it. I’ve been trained in it for years, both of my jobs involve it on a daily basis, I’ve seen what it can do for kids with autism or various other diagnoses. That being said, I need to make one point clear, one that some people either overlook or don’t understand. And let me preface this by saying that I am not talking about kids with autism who are nonverbal, who have little functional communication, who are on the far end of the spectrum. I’m talking about the more middle-to-higher communicative kids. Okay.

We teach “Thinking with our eyes,” and “Keep your brain in the group” and all of the other wonderful catch phrases. And once they catch on, they work wonders. But sometimes they are not going to work. Sometimes, no matter how long you’ve worked on that skill, your autistic student is not going to “think with their eyes” and look at you while you’re in a conversation with him. Sometimes, no matter how many times you explain that it’s unexpected to blurt out a random thought, she is still going to blurt. It’s not (necessarily) because s/he doesn’t understand that skill.

Some of it has to do with processing. For that first student, it’s possible that his brain is overloaded. Maybe he has a language disorder as well and lags behind in receptive or expressive communication. Maybe, his brain is trying so desperately to listen to what you’re saying, understand it, remember it, and formulate the “expected” response that there is just no more availability for his brain to ALSO look at you, visually process what you look like, what your mouth movements look like, AND do all of those other skills. For the second student, maybe her working memory skills aren’t so solid. Maybe she doesn’t know (as one of my students was able to explain to me — changed the way I thought about this entirely) how to “keep thoughts from coming down to her mouth” and “keep them in her brain until later.” Maybe, as this student also explained to me, she hasn’t learned how to “save a thought in her mind” so that she can “remember it later.” Maybe her blurting isn’t her not caring about expected behaviors, but maybe it has to do with the fact that her brain sent that thought down to her mouth, and her mouth needs to say the five-word script from a commercial in order for her to move on. And maybe, as is in the case with my student, if you let it happen but get her right back on track, it’s actually more productive and beneficial. Or maybe that student’s brain is so disorganized, and there are so many scripts and facts and thoughts floating around, that if she doesn’t say that thought right away, she will forget it forever, and she desperately wants you to hear how important it is to her. So maybe the solution isn’t to berate the individual for being “unexpected” during class, but rather, say, “We can talk about that at the end of class, I’ll write it down so I remember for you,” and get right back to the lesson.

PLEASE don’t get me wrong. Social Thinking is incredible. But it’s not a full-proof solution for every moment of every day. Sometimes, we need to go with our intuition. To put ourselves in these kids’ shoes (which I realize is easier for some than others — I happen to believe that while I fall on the “typical” side of the continuum, I am close enough to the point where “autism” begins that I understand a lot about these kids intuitively) and think, “Is there a reason this isn’t working, other than because they can’t do it?” And maybe you’ll be surprised.