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Never Say Never

4/30/2015

Copying proof of diagnosis for Caley to receive services, I ran into Caley's psychiatric evaluation from 2011. The entire thing is very dourly written, and it concludes with the following:

"She has serious social and learning difficulties. Within reasonable medical probability, she will have difficulty performing college work adequately unless she has special accommodations.

Based on my interviews with her and her mother, she will, in the foreseeable future, not be able to live independently due to her significant problems with peer relationships, impairment in the use of non-verbal behaviors to regulate social interaction, her extreme intolerance to change, and her rather stereotyped interests and behaviors."

I would like to point out that less than a year later, Caley was living independently. And shortly after that she was performing her college work sans accommodations. I don't say this to decrease your trust in autism professionals - after all, I hope to become one. I'm also not trying to put down accommodations or assisted living - recently Caley moved back in with me for a little bit while she gets off her feet post-graduation, and she definitely has benefited from accommodations in the past.

What I am saying is that evaluations like this HURT. Reading this hurt my mother and my sister, and devalued her belief in her own competence. What's more, attempts to predict the limits of a person's abilities are generally pretty doomed to failure. There is no way to truly know what someone will and won't be able to accomplish. So we should never, EVER say never.

-Creigh

Note: On our Facebook page, where this was originally posted, a reader pointed out how very applicable one of Shel Silverstein's poems for children was to this, so I'd like to share it here:

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Reader Q&A: Is stimming helpful or hurtful?

4/19/2015

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I recently checked the comments on our blog, and found a question on one of our previous posts, "Stimming Has a Function".

Basically, the mother was asking about the differing opinions she hears about stimming. Some professionals will say it's a bad thing and will keep her child from learning. Other people (like me in the article) say you should let your child stim. She felt stuck in the middle. She wanted to let her child stim, but she was scared that some day she'd look back and worry that stimming interfered with his learning process. I replied to her, but I thought this was something many of you may benefit from as well. So here's my response:

"Sorry it took me so long to get back to you - I don't get alerts for comments on the website, only on Facebook. I've heard it both ways, too, and it's hard. So what I did was I went on WrongPlanet.net, an online forum for autistic adults and I asked them what they thought about these claims that stimming was bad for them. I'd REALLY recommend you read through their answers:
http://www.wrongplanet.net/forums/viewtopic.php?t=254039

If you don't have time to read, here's the brief summary. They're pretty overwhelmingly in favor of allowing stimming. I particularly liked what Vicky Gleitz, who gave me permission to use her quote, said. "When I stim, happy becomes happier. When I stim, creatively, entire worlds in vivid detail pop into my mind. When I stim, scary goes away [or at least gets smaller] as does confussion. When I stim, I'm fairly sure that my IQ rises significantly. Just thinking about how so many want to inhibit our autisticness I get so angry, Thankfuly, I am able to stim when this happens. And that helps."

I hope this helps!!!!!!! Let me know if you have any more questions!"

What do you guys think? Do you have any concerns or questions about stimming?

-Creigh

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“Her Autism Is Getting Worse”: Perceptions Can Be Misleading

4/19/2015

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Reading my previous post, I realized how easy it would be, were Caley less able to communicate what was going on and our family less familiar with autism, to get the idea that her autism was ‘getting worse’. Naturally, this phrase is problematic in of itself. Namely, autism is inseparable from Caley, just the same way that being female is, and she doesn’t view being autistic as a bad thing. As a result, the entire phrase just doesn’t work.

But in our hypothetical scenario, in which, say, a parent of a newly diagnosed non-speaking child was viewing these same changes, I realize that it’s easy to get the wrong impression and think someone can get ‘more’ and ‘less’ autistic. Today, I’m going to clear that up.

For some background for those unfamiliar with Caley’s situation, lately she has been having more autism-related difficulties. She has a stronger need than usual for predictability – she needs routines and plans to remain unchanged right now, and if they are changed it’s highly distressing for her. She has greater sensory needs than usual, as well. Recently, Caley began biting at her wrists, due to sensory needs, too, so we bought her some chewelry (in this case, a chewable bracelet) to help her address that urge without hurting herself.

Caley’s also more sensitive to sensory sensations than usual. As a result, all the usual restaurants that we used to eat at are out of the question – now we have to eat the table furthest away from any other patrons in a quiet Japanese sushi restaurant. And having earplugs on hand is a must. She has greater difficulty coping with shopping trips, and more trouble functioning in daily life, whether it’s preparing food for herself or getting to class. In short, her functioning level at the moment is significantly below where it usually is (although, of course, it fluctuates day to day and moment to moment).

With all this as background, it’s easy to see how someone less familiar with autism might mistake these changes as coming from her autism itself changing. The reality, however, is far different from that. Caley is just as autistic as she has always been. The difference, however, lies in her coping abilities. Ordinarily, Caley can blend pretty well with neurotypicals. But doing all the neurotypical-seeming things – dealing with changes in routine without showing the strain, coping with sensory input, etc – take energy. (See ‘the spoon metaphor’ for more on this.) And the instant that Caley gets sick, or is dealing with depression, etc, the energy she normally uses to help her deal with the neurotypical world is used instead for dealing with this new problem.

Here's Caley's explanation:

"Since I’m having to deal with other things, the energy I normally use to deal with things like making sure I seem neurotypical-ish and cope with sensory things is diverted. The supposed “bad things” about being autistic get emphasized more."

Without the energy to devote to blending, Caley’s autistic characteristics seem to strengthen. But, again, that’s not a change in her autistic-ness – it’s a change in the energy she can devote to blending in.

I hope this helps explain some of the fluctuations in ability levels you may see in people on the spectrum and the reason behind them. Let us know what you think!

-Creigh

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Difficulty with Changes and Need for Predictability

4/18/2015

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Lately Caley’s been needing a bit more support, so I’ve been coming down every weekend I can to visit and help her. Every time I visit, we eat at the same restaurant: a Japanese sushi restaurant. Initially this was done because of sensory needs. A sushi restaurant, blessedly, is darker and quieter than most restaurants. Right now, with her higher than average stress levels, Caley has less energy that she can devote to helping her deal with sensory problems, which has eliminated most any other restaurant as possibilities.

Lately, though, we’ve been eating at the restaurant not only out of sensory needs, but also out of a need for routine and predictability. After the first three visits there, Caley said eating there became a tradition for her: a routine that she could count on to provide predictability. What’s more, she has ordered the same fish and vegetable dish each time. Today she professed that she would like to try something else, but as that would change her routine, she didn’t feel comfortable doing so. To help her, I ordered something new and let her ‘steal’ a few pieces of sushi from my plate, to eat alongside her fish and vegetable dish.

I asked Caley why she needed routine, and this was her reply. “It’s one less thing for your brain to be worried about. There’s always a lot of stuff you have to deal with. At least with routine there’s something you can control. There’s something that will be the same. And when everything else is changing, you want something to be the same.”

You heard her: routine and predictability are very important to people on the spectrum. Unfortunately, this is a changing world and we can’t always have the same routines. There are several things to do when that becomes an issue. One of these things is giving warnings in advance. Last weekend I was supposed to come visit Caley. I had planned to leave first thing in the morning to go see her, and I told her so. Unfortunately, later that night I discovered that my boyfriend was really sick and he probably had strep throat (which I, thinking I only had a cold, had been the unknowing donor of). I texted Caley and told her that, though I still planned to come visit, it was possible that I may be too unwell to go.

I continued warning her of this possibility the next day as I waited at the walk-in clinic. Lo and behold, the doctor tested me, found I had strep, and strictly warned me not to travel. (I was hard to convince, because I really wanted to go help Caley, so she had to cite the example of Jim Henson, who apparently died of strep complications, before I agreed to rest at home instead of traveling.) I told Caley, and she was understanding and said that having the warning of that possibility really helped her.

Caley is going through a lot of changes right now, which is why she needs more support and why routine wherever she can find it is more important to her than ever. For most people, these changes would be a cause for joy and relief. Today, Caley is getting her first car, a graduation present from our parents and grandparents. And in two weeks, Caley will be graduated from college with a degree in Public Health and a minor in Homeland Security and Emergency Management.

Both of these things Caley has worked very hard to achieve, getting her license and putting in three years of labor towards this degree, and we are all very proud of her. In fact, these changes are seen by many as the ultimate success. Yet, they are still just that: changes. And change can be scary for someone on the spectrum, because change means unpredictability and uncertainty. So, though Caley is happy to be getting a car and graduating, she is still simultaneously frightened of what all these changes in her life mean.

If ordering a different meal in a restaurant is difficult for her, because of change, imagine how she feels going from being a student, her role for almost the entirety of her life previously, to being graduated and looking for employment. In short, it’s terrifying. So finding little bastions of routine and predictability wherever she can is absolutely essential. And having a support system helping her transition to this change is invaluable. Hopefully, after reading this article, you understand a little better how to provide those supports to someone in your own life.

-Creigh

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Sometimes Good Things Don't Feel So Good...

4/10/2015

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When I took a child I was taking care of to get a haircut (and I had tried SOOOO hard to do everything I could to prepare him) he started screaming when he saw the scissors and trying to run away from me. So I'm running after him in this hair salon, praying he doesn't run out the door and into the parking lot. I catch him and try comforting him and he tells me, for the very first time, "I'm scared!" And when I asked him why he said, "Hurts." (Referring to the haircut.) God, I was so happy that he could express himself like that, but knowing how he was feeling broke my heart.

I'm going to be honest - I broke down bawling in the middle of the hair salon and had to be comforted by the hairdresser (who was, in fact, the mother of a child on the spectrum herself, hence the reason we chose that salon). I know, as a nanny, people don't expect you to care that much about the children, which probably contributed to the hairdresser's surprise at my tears, but I love all the kids I work with dearly and to see them afraid or in pain - even if it's a great milestone in expressive language, it breaks my heart. Sometimes good things don't feel so good.

To read about the eventual successful haircut we had (which was not that day, I assure you), and what we did to make it successful, read about what we have dubbed "The Lego Trim" here:
http://www.autismspectrumexplained.com/…/autism-and-haircut…

To read about the other things I'd tried (this was written about what I'd done right before my salon breakdown), read this post:
http://www.autismspectrumexplained.com/…/autism-and-haircuts

For some background on the haircuts, for anyone who is interested, we had probably five different only semi-successful (or completely unsuccessful, in the case of the one I wrote about) haircuts before we found the recipe that worked for him. But now that we've figured it out, he is doing SO much better with haircuts and what was once a traumatic experience is now one he requests! (About a month ago he wanted to go see a movie and when I told him not today he said, "Maybe after haircut." He knows that's one of his rewards and he was actively seeking it out to get to what he wanted!) It's a story about the importance of not giving up until you find the formula that works best for the child involved.

How about you all - have you had any experiences like this?

-Creigh

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On Autism Awareness: Why Caley and I Will Not Light It Up Blue

4/2/2015

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If I wear blue today, it will be because I stumbled blindly out of bed and grabbed the first thing I saw which happened to be blue. Otherwise, this Autism Acceptance Day (yes, it's not just autism awareness day!), I'll be wearing red. And maybe some taupe. Here's why:

1. Autism awareness can be a great way to feel like we're helping...
...but in reality, people tend walk away from awareness events with little if any more understanding for autistic people than when they came. Instead, as Jess at Diary of a Mom coined the phrase, the most they tend to walk away with is cocktail party awareness (if that). 1 in 68, more boys than girls, more common than childhood cancer/diabetes/AIDS combined (which, by the way, is a very hurtful comparison) - that's what you tend to leave knowing. Awareness makes us feel like we're doing something - it feels GREAT when we light an entire building up blue or share that Autism Awareness status! But most awareness related things are actually not conducive to understanding. Awareness was great back when no one had heard of autism before, and it still comes with the best of intentions, but now that most people have heard of autism (at least here in the US), we need to move on to tackling harder goals - like autism understanding and acceptance of autistic people for who they are.

2. Autism awareness can actually be pretty hurtful to autistic people...
...because how often do you ever spread awareness of something good, or just different? Ever seen a gifted awareness campaign? No? Neither have I. If you just spread awareness, the impression people can leave with is that autism is bad and autistic people need to be saved. (Don't believe me? Think about how similar to the breast cancer awareness campaigns autism awareness campaigns are.) Moreover, it risks spreading the false impression that autistic people are lesser, because again, if you’re spreading awareness it lends the impression it’s because they have this “bad” thing. A lot of people on the spectrum, Caley included, hate April for this very reason. Which is why they’ve launched counter-movements: Tone it Down Taupe and Walk In Red.

3. Light it up blue is especially not useful and hurtful…
…because there are two likely outcomes when someone walks past a blue building. 1) They think, huh, the building is blue. Or 2) They think, huh, the building is blue, I wonder why that is? Oh, yeah, I remember, it’s because of autism awareness. I’ve heard of autism before. Those are those kids who have some kind of problem, right? ...and then they (likely) walk away with the exact same level of lack of understanding as they had previously. There are many activities that would be better suited to help people understand autism than lighting it up blue.

And why is it hurtful? Well, not only for the same reason that autism awareness campaigns can be unintentionally hurtful, but also because according to Autism Speaks the color blue was chosen EXPLICITLY TO REPRESENT BOYS ON THE SPECTRUM. So if you’re a girl on the spectrum the message that sends is that you're not actually important to the people lighting it up blue. And that’s just messed up.

4. These are generally activities associated with Autism Speaks…
…which Caley and I and a LOT of other autistic people do not support, due to some very hurtful actions on their part, among other things. Read more here:
http://www.autismspectrumexplained.com/…/i-too-my-autism-sp…

That’s just the very tip of all the things I want to talk about related to autism awareness, there is much more to it. If you want to read more, check out The Negative Narrative, a page on our website about how unintentionally hurtful many of the things done to help autistic people are, the narrative about autism in our society, and how to avoid accidentally contributing to these hurtful attitudes: http://www.autismspectrumexplained.com/negative-narrative.h…

And if you’re looking for alternatives to all the blue going on, check out Walk in Red, a protest against some of the harmful attitudes that can accidentally be spread this month, and Tone it Down Taupe, another protest. I think a post they shared says everything about how this month can feel for people on the spectrum. “April 1st is International Allism [Meaning Not-Autistic] Awareness Day. Today, please remember to Tone it Down Taupe for all those persons currently suffering from a condition known as allism. It is a tsunami. An epidemic. Experts currently believe that 49/50 people are allistic, although those numbers may be thankfully diminishing. As you wear your Taupe, remember to be extra kind to an allistic today. Don't forget to let them know how truly inspirational they are for surviving such trials as excessive social contact. Tone it Down Taupe for Allism Awareness!” It's an exercise in empathy to read that.

This April (and every month), please join Caley and me in supporting autism understanding, acceptance and respect, not just awareness. If you have any questions, feel free to ask. Remember, Caley does read these comments and can find things hurtful, so please use your judgment before commenting.

-Creigh

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Reader Q&A: It's okay to be sad sometimes

4/1/2015

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I had a reader email me yesterday and, with her permission, I'd like to share our exchange with you all, because I feel like this is a common feeling parents can run into - guilt about feeling different about your child's future.

READER:
So I was at the park with my son yesterday, and a young man and his little brother arrived. My son was playing with some "typical" kids, all was going pretty well. He was playing with the young man and the little brother also. The kids he was playing with left on their bike and scooter, and my son got very upset thinking they were leaving/cheating/trying to get away from him fast - he didn't "get" that they were going home, though once he calmed a bit, he understood and was ok.

A little while later, the young man came over to talk, and asked if my son was autistic. I said yes, mostly shows up socially.

I noticed I felt sad, though - and then I felt bad for feeling sad - like I was betraying my advocacy for feeing sad. A strange spiral of feelings. I think the sad comes from me wanting things to not be hard for him, and knowing that although he's just himself to me, that the stuff that I find charming and just "him" is stuff that might separate him and set him up for difficulty/bullying/whatever.

Sigh. Am I awful, does this make any sense? Do moms go through this, even activisty-moms?

MY REPLY:
It makes complete sense, you're not even the slightest bit awful, and all moms - and other caregivers, like me - go through that. I've had those same feelings. And you know what? That's okay. Accepting your child for who they are doesn't mean that you have to be cheerful about everything that comes along with that, especially when that something is bad. And knowing your child is going to have a tough time at some points? That's a tough thing to deal with. I've been there myself, when I was nannying, and I get it.

Your experience actually reminded me of one of mine. My post was about something different - it was about feeling gratitude, rather than sorrow - but there's a common theme. We both had this idea that accepting someone on the spectrum for who they are should mean that we feel the same emotions regarding them as for neurotypical children. But their reality is different, when you look at societal treatment, and it's okay to recognize that. Here's the post, let me know if you relate:http://www.autismspectrumexplained.com/…/on-society-gratitu…

Creigh

READER'S REPLY:
Thanks! That helps a lot.

It is kind of sucky to think that we end up cheering because "yay, somebody's not a complete jerk!" Woohoo. tongue emoticon

Totally relate - I don't even want to think about middle and high school. Hopefully he'll find his geek-crowd - having the other slightly-off-kilter people as my social group was a life-saver. If you can't fit in, at least not fitting in with others that don't fit works smile emoticon

MY REPLY:
Actually, when you embrace how you don't fit in and embrace yourself for who you are, your quirkiness can actually add to your popularity. I know a lot of spectrum-y people who are popular for that very reason.

This is where you can come in and help, by raising your son to love himself for who he is. And you're doing a great job of that. smile emoticon

I hope this exchange helped any of you who were having similar feelings. Feel free to comment with your thoughts and questions below!

-Creigh

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Search the site...

Never Say Never

Reader Q&A: Is stimming helpful or hurtful?

“Her Autism Is Getting Worse”: Perceptions Can Be Misleading

Difficulty with Changes and Need for Predictability

Sometimes Good Things Don't Feel So Good...

On Autism Awareness: Why Caley and I Will Not Light It Up Blue

Reader Q&A: It's okay to be sad sometimes

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