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Autism and Haircuts Part Two; The Lego Trim

7/29/2014

I wanted to share with you all two words I never thought I'd hear.

"Please snip!"

Yes, you read that right! We did trim take two today and as you can tell, it went really well, beyond my wildest expectations. He was ACTUALLY REQUESTING THE CUTTING by the end! I cannot tell you how exciting that is, but I think you know.

So, here's the part where you wonder, what did we change that made us getsuch a different result this time? For one thing, we minimized the sensory load where we could. We did the trim inside the hairdresser's house, which really took a lot of the environment stress away. We also blew the hair off of him immediately when it fell, and tried to keep it from falling on him in the first place. And we did it in three snip bursts, counting them to make sure he knew how long he had to put up with it each time (which seemed to really help). We also didn't make him wear the hairdresser cape when he refused (and, for the first time, he explained why - it's too tight around his neck).

The real keys to success, however, were these: listening and rewarding. The hairdresser said the scissors were taking too long, and she wanted to use the clippers. Well, behavior is communication, and it was DEFINITELY communicated that those clippers were allowed nowhere near his head. (And continued to be communicated for ten loud minutes, until I convinced the hairdresser to heed him and go back to scissors.) Had we kept trying for the clippers, we would not have had a successful haircut. The hairdresser said, he just needs to see that the clippers don't hurt. But we need to trust that he knows himself and his needs and actually listen - and once we did we got the outcome we wanted.

The other key was the reward. Normally, I brought candy and would give him M&Ms in exchange for snips. It occurred to me, though, that Legos are much stronger reinforcers for him (like many kids, he's super into Legos), and so before I came I bought a Lego Juniors Spiderman set. Best. Idea. Ever. I opened it up and showed him the pieces, and explained the deal. Every time he did three snips, which we counted together, he'd get one Lego to add on to the figure (going in the order of the instruction book, of course).

It worked AMAZINGLY. At the end, I was showing him the next Lego he needed ("Oh, you have three tires already, but you need one more!") and before I could remind him that he had to do 3 snips to get it he was on top of it! "Snip, please!" he said calmly each time (by the end), and actually held still! No screams, no fighting, heck, hardly even any fidgeting! It was awesome. By the end, we had a happy boy, a fully assembled Spiderman set, and the best haircut I've ever seen him have. Oh, and a very, VERY happy nanny!

We had to get creative, yes, but after months of trial and error I think we've finally found the magic formula to a stress free haircut!

-Creigh

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Fun with Scripting

7/27/2014

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Note to self: I need to work on memorizing some scripts! Trying to fulfill my role in a new script (which requires a lot of guesswork on my part) and drive at the same time in an unfamiliar city is hard! Thought some of you might relate.

If I ever decide to go into acting, I'll have a lot of practice, lol. (I take the role of Buford in the script...it starts at :51 and ends at 1:39.)

For those of you who aren't familiar, scripting is a comfortable and fun thing for a lot of autistic kids/adults to do. It's also (anecdotally) part of the pathway to language for a lot of kids. If you go over to Diary of a Mom, she's got a fun video of Brooke scripting up. https://www.facebook.com/photo.php?v=10152211813501937&set=vb.310066991936&&theater

-Creigh

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It's Raining Tacos

7/25/2014

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I've posted this before, when Caley went on a Bollywood binge, but the trick about working with people on the spectrum is that they can loop the same songs over and over for days on end without getting tired. And that is how I came to have this song stuck in my head today. And, yes, I know all the words to it. Be grateful I didn't link to the 10 hour version, lol.

The runner up for song most often stuck in my head as a result of caregiving? The Jessie theme song.

What song do you/your kids loop?

-Creigh

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Autism and Haircuts

7/25/2014

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We're doing another haircut tomorrow you guys. And right now, as I'm trying to go back to sleep, I can't help asking myself over and over in my head - is there anything else I can do to make this easier? And, more importantly, do we have everything prepared? As we've done several of these haircuts now, I'm starting to develop a list of things that we need to bring to make the process go more smoothly/easier on him. At this point, it's almost like a checklist.

My Checklist for a Successful Haircut
- Phone with lots of fun apps
- iPad, also with lots of games
- Super hero capes (he won't wear the hair dresser capes, hence the super hero capes)
- Lots of choices of clothes: Long sleeve shirts and long pants (multiple sets to change out as hair gets on them) and Buzz lightyear costume (because may as well try to make this feel cool)
- Visual schedule (with a positive thing, going out for ice cream, immediately after the trim)
- Candy (I use candy as reinforcers. My candy of choice is mini M&Ms to try to reduce the quantity of sugar getting into him)
- Sensory brush (for before the appointment)

And the most important thing? A hairdresser trained in working with autistic people. We have an autism group semi-locally and I called to ask them who they recommend (which I highly recommend parents do as well!). Turns out they train businesses to be autism friendly and they recommended this one. It also turns out that this particular hairdresser didn't need all that much training - her son is autistic. This will be our first haircut with her, but I'm sure she'll be great.

Now, some of you may be wondering, why is having a haircut such a big deal? There are three major aspects to this answer:

1. Sensory issues
This is a really big factor. Hair salons are often bright, you have loud clippers/scissors on your head/next to your ears (I'm bringing ear plugs to help with this, if he'll wear them), and, worst of all, some stray hair will inevitably fall on your skin. For those of us without sensory issues, this hair is already annoying and bothersome. For someone WITH sensory issues (which autistic people do have) this is likely to be magnified, to the point of a significant amount of pain. Either different sensory issues (maybe the velcro?) or simply past bad experiences have led the child I care for to refuse to wear a hair dresser's cape. That means in order to keep the hair from falling on his skin (which hurts), we've had to get creative - hence, the super hero costumes.

2. Bad experiences
Even the hairdresser herself said before she knew her son was autistic, she didn't know how to help him with haircuts. Before a child is diagnosed, it can seem like they're just having a temper tantrum or 'acting out'. And even if you know those aren't the case, without the guidance of a diagnosis it can be hard to know what to do to make haircuts less traumatic. This can result in bad experiences for the child and lead them to associate hair cuts with bad memories. Parents, don't feel bad - before a diagnosis, you really can't know why children are reacting this way, and if you don't know, you can't know how to help.

To help with the previous bad experiences, at a previous hairdresser's brilliant suggestion, we've rebranded hair cuts. They are no longer called hair cuts around him, they're called trims. This actually works because the experience that we're doing now is like night and day different from what happened before he was diagnosed. Now we play by his rules on his schedule, to whatever extent we can, and offer loads of treats and games to help smooth the experience. And when I told him we were going to be doing this tomorrow, he made sure to tell me that it was NOT allowed to be a hair cut, it had to be a trim. So the rebranding has definitely worked.

3. Change
Change can be a difficult and scary thing to deal with for people on the autism spectrum, and hair cuts bring change. They bring change in how your hair looks, and they can also bring changes to established routines. To help minimize the impact of the latter, we're using a visual schedule (which we started reviewing together this past night).

We're also making sure that this is coming on a day relatively free of change earlier in the day. Last time I made a mistake in assuming since a change earlier in the day had been dealt with well, we were still fine to deal with the trim. I was wrong. Dealing with change and sensory problems and other issues isn't just something that gets taken bit by bit. It's a cumulative effect. So though he'd done well with the change earlier in the day, that left him with less energy left over for coping for our big change in the afternoon.

So that should hopefully help explain the reason that haircuts can be so difficult, and what we're doing to help minimize these issues. Oh, you guys, I am so nervous for him (as I always am with these haircuts - I know how rough they are on him). I really, really hope it goes well and we can continue down our road to successful, non-traumatic hair cuts. *crosses fingers* Wish us luck!

-Creigh

Update: It did not go well, and so we decided to try the cut again a different day in a different location (in the hairdresser's home instead of in the salon - even when you think you have everything covered, there's always one variable you fail to account for and that was it...).

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"I, Too": My Autism Speaks Story

7/18/2014

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Almost everyone in the autism community has an Autism Speaks story. It may be positive ("I raise money for them!") or it may be negative ("Autism Speaks? You mean Autism $peaks."), but it is very rarely neutral. I’ve told snippets before, but here’s the entirety of mine.

When I was in high school, I was talking to a classmate about autism. I said my sister had it and was trying to cobble together an explanation of autism, even though I had little understanding of it. “We should do an autism fundraiser!” she said. I said, “Well, there’s an organization we could raise money for, Autism Speaks.” In a flurry of excitement, we ran all around the school that day, getting permission from administrators and teachers to host a Walk A Thon on our campus.

Though Caley was the inspiration for the fundraiser, I never asked her opinion about it, assuming she’d be all in favor of an organization devoted to helping her, nor did I involve her in it. Ultimately, between my fellow student and me (she got the project rolling and I took care of the day-of planning) we actually pulled off our plan, a minor miracle in of itself, and raised over $500 to donate to Autism Speaks, much to our mutual, extremely pleasant surprise.

Now, fast forward a year. I was hanging out on Facebook, like most college kids (and, these days, adults), do, chatting with a friend I hadn’t seen in years. In conversation, he mentioned to me that he was later diagnosed as being on the autism spectrum. I, still proud of my past accomplishment, excitedly messaged him that I’d raised money for Autism Speaks. I don’t remember his exact response, but it was something along the lines of him saying, “I really wish you wouldn’t have.”

I don’t remember what that moment was like, but I’m sure it was one of shock. Why would an autistic person not want me to raise money for an organization devoted to helping them? I questioned him, trying to get to the bottom of this paradox. And he told me. He told me how Autism Speaks didn’t actually have any autistic people on its board, and how Autism Speaks didn’t speak for autistic people. Their agenda, in fact, was quite the opposite of that of most autistic people, he said.

I’m going to be honest. I didn’t believe him at first. So I did what anyone in my shoes would do – I turned to Google. And there waiting for me, where I had never thought to look because of COURSE an organization focused around autistic people would have the same goals as them, was article after article, post after post, of damning proof. You can do the same search yourself right now – in the years that have passed, more and more articles have joined the ones that convinced me.

And finally, I turned to the person whose opinion on the matter was the most important in the world to me. I turned to Caley. I asked, “Caley, what do you think about Autism Speaks?”

This video was her response. When you watch it, imagine her or the autistic person you know watching it. Imagine their perspective. Imagine how Caley felt when, as she told me she did, she Googled autism and divorce as a child after our parents divorced, looking for advice on how to help her cope with the divorce as an autistic person, and instead found this. https://www.youtube.com/watch?v=8mycxSJ3-_Q

She sobbed for hours, having been told that she was the source of all our parent’s woes – including the very divorce she’d been seeking help for.

This backlash against this video, blessedly, was huge, to the point that it inspired parodies by the autistic community (https://www.youtube.com/watch?v=yU2paLv1MGE) and outrage from many allies. Ultimately, Autism Speaks withdrew the advertisement. They never, however, publicly apologized.

And it doesn’t end here. The list of the hurtful and harmful things Autism Speaks has done just goes on and on:

- They supported the Judge Rotenberg Center, a place where the electric shock “therapy” for its autistic students (read: torture) is so bad that the United Nations called for an investigation. http://www.autistichoya.com/2013/11/an-unholy-alliance-autism-speaks-and.html

- They have no autistic people on their board, and even when they had an autistic person briefly working alongside them, Autism Speaks leaders did not listen to his words, and as a result he resigned. How can they speak for autistic people when they don’t even listen to their voices?
http://www.disabilityscoop.com/2013/11/14/noted-cuts-ties-autism-speaks/18893/

- They only give 4% of their funds to services for autistic people, and a mere 1% of their money goes to research benefiting autistic adults. To give perspective, 5% of their funds go towards salaries and administrative costs. As a result, many autistic people refer to them as “Autism $peaks”. https://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf

- They intimidated a 14 year old autistic girl who had dared to make a parody site about them (NTSpeak). http://autism.about.com/b/2008/01/22/when-is-a-humorous-site-not-so-funny-autism-speaks-has-its-say.htm

- A lot of their funding for research goes towards prenatal autism testing. This is research to take us down a road of eliminating autism, not even for those of you who are pro-cure, for the people who are here, but simply through abortion (as has already happened with Down’s syndrome). Autistic people see this as the road to eugenics, and I’d have to agree. https://www.youtube.com/watch?v=ez936r2F35U

- They vilify and demonize autism and autistic people in their campaigns. The more recent instance of that was in the “Call to Action” that their leader, Suzanne Wright, put out, in which she compares autistic children to having been kidnapped, characterizes them basically as vegetables and their families as not living. http://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle

There’s more where that came from - enough to fill an entire website devoted to bringing to light these many wrongs (http://boycottautismspeaks.com/why-boycott-1.html).

As you can imagine, no, Caley does not support Autism Speaks.

If you’re reading this in shock, know that I had the same reaction when I first learned. It had been inconceivable to me that an organization’s goals could be so very opposite of those they claimed to represent. Once I realized the reality, however, I could no longer support them, and was horrified that I’d donated money to them in the first place.

And, that, is why I called this post “I, too.” Because I am not the only one who had this experience. We all have these stories, which start off with initial support (and even fundraising), followed by shock and disbelief, then a battle to square the organization you thought you knew and that which exists, and ultimately, a renouncement of the organization. And I know some of you reading are penning your stories at this very moment, having learned for the first time that Autism Speaks does not speak for autistic people. To those of you who fall into that category, I’m sorry. Yes, I wrote this to educate you, but particularly for those of you who, like me, were active fundraisers, to have heard that the very act that we intended to help the autistic people we care about actually, in fact, hurts them – well, it can be hard news to take.

The good news is, you’re not alone. Even the most respected voices in the autism community have been there, like John Elder Robison, author of Look Me in the Eye, and Jess at Diary of a Mom. The better news is, just because Autism Speaks is not a good organization to support, that doesn’t mean you can support autism organizations anymore. There are some wonderful pro-autistic people organizations out there, like the Autistic Self Advocacy Network (http://autisticadvocacy.org/), the Golden Hat Foundation (http://www.goldenhatfoundation.org/), and many, many more.

I asked Caley what she’d want people reading this to do with this newfound knowledge of the harm Autism Speaks causes autistic people. She had this to say:

“It would be really appreciated if you helped spread the news, so less people had to go through supporting Autism Speaks and then later learning about what they do. And also, obviously, if you support them, PLEASE stop.”

Now you’ve heard her. You’ve heard the autistic community. And you’ve heard me, a person who was once sitting in the same position as many of you are now. Autism Speaks may not speak for autistic people, but autistic people are speaking for themselves loud and clear. Will you listen?

-Creigh

Image is of me, Creigh, at the high school fundraiser I hosted for Autism Speaks. I'm standing in front of the bleachers, sleeves rolled up and sunglasses on, looking proud of myself. I'm wearing a blue "Autism Awareness Day" t-shirt, with the Autism Speaks logo prominently emblazoned on it. If only I could go back in time and tell that me what I know now...

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Self-Advocacy is Only Half of It – On the Importance of Listening

7/17/2014

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So I may have had a minor freak out on my sister in the parking lot of a restaurant the day before my dentist appointment when she reminded me about it. I told her that I had tried to say I didn’t want to go to the dentist, that I hated them, and that I really didn’t want to go because it HURT. Plus, truthfully, I was a little bit scared. She told me that I could advocate for myself at the appointment and that if I didn’t want to, I didn’t have to go. So I went.

Now, my fear and hatred of dentist appointments and all things to do with teeth have several roots (no pun intended). For one thing, I once had baby teeth that needed to be pulled, and I remember the dentist putting his knee on my chest to pull it out. It hurt a lot and I kept on spitting blood, but no one seemed to think there was anything wrong with that. Seriously, he should have figured out that by the time he had to put a knee on my chest that maybe we should reschedule an appointment and come back later when the root had dissolved more.

My other issue came from my orthodontist. For one, they never really thought that my cheeks being torn up by the orthodontia to the point that flesh in my cheeks was hanging and bleeding. I had had my tongue drilled through once as well (by accident while they changing out some of the orthodontia). Seriously, I was eight or twelve at the time, they should have expected my tongue to move.

But the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me.

Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.

While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. [Creigh’s addition: And, really, in what world is bullying to be taken seriously, but someone telling you they're in serious pain is not?!]

So, yet again, four days ago I had to attempt advocacy about my mouth…with my mouth (joke intended). I told the dental assistant about how I had a sensory disorder and that brushing my teeth and especially flossing really hurt, and that she wasn’t to floss me. She kept arguing that it wasn’t sensory, it must actually be me grinding my teeth, like she knew my body more than I did. But finally she conceded and said she wouldn’t floss me, and was kind enough to give me numbing gel while she did her work.

Unfortunately, she then decided that it was okay to floss me. I don’t know why I didn’t speak up about that. Sometimes self-advocacy just feels like wasted energy. Because after you advocate for the first time and they won’t listen, you know they won’t follow your wishes at all. I’d hoped that would have ended when I became an adult, but it didn’t.

I went off, disappointed. Yes, my teeth were clean, but my wishes weren’t respected. And the numbing gel hadn’t changed the fact that I could feel every scrape against my teeth, taste the blood in my mouth, and hear the high pitched whirring of the tools.

At the end, I dared to ask her, hey, look, do you know of a toothpaste that doesn’t hurt? And she decided I was allergic to an ingredient in toothpaste. At that point, I felt too cowed to be able to correct her. So I didn’t get the information that I needed.

Afterwards, I shared the information with my sister, and Creigh shared with me that the receptionist had asked her if she would sign my HIPAA waiver for me, or if I was competent enough to do so myself. I’m freaking twenty years old. I’m an adult. Yes, I’m competent.

Unfortunately, this sort of issue has followed me around in all sorts of areas. Including medical, where not advocating for yourself can be an incredibly big issue. Multiple of my doctors have not listened when I told them I did not feel comfortable taking certain medications. And I felt cowed into accepting the prescription. Even though I tried to argue, they wouldn’t even listen. They just bulldozed over me.

So, like the girl in the orthodontist’s office so many years ago, I had to take matters into my own hands. I simply didn’t take them. Or I’d try taking the medications and then stop taking them by myself. Which led to dangerous withdrawal effects more than once. Because I didn’t feel like I could tell them I wanted to stop and have them listen to me.

All of this could have been avoided if I was listened to. Self-advocacy is only half the story. You have to have someone to listen to your words. Otherwise you just stop advocating. Because what’s the point?

So do us Autistics a favor and please listen to us when we try to advocate for ourselves? Because it’s really hard and because we’re going to have to be doing it for the rest of our lives.

-Caley

[Note: Post dictated by Caley and typed by Creigh, but these are all Caley's words. Image is of an array of dental tools on a tray.]

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Getting Siblings to Bond

7/16/2014

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That question, the one of "How do I get my two children to bond?" comes up so much. I get asked this a lot, I see people ask in other forums, and I see parents despairing at how to nurture a relationship between their neurotypical and autistic children. Well, today I answered it (and how to apply this to other children) on another forum (in the Diary of a Mom comments...have I mentioned I love that page? lol), and I figured I'd post that response here to see if any of you also benefited from it. It's not perfect, I can only give the sibling perspective here, and I've only gotten this through personal experience, but I tried my best and hope it helps!

I remember our relationship as having come naturally to me, so naturally. That picture of my sister and me as kids on our cover photo? I asked my mom about it later, and she said she thinks it was, in fact, posed...not by her, but by me! I hadn't known she was taking a picture, I just loved my sister's presence that much.

But I realize that there are environmental influences which helped me along that path. I didn't understand that until I started caring for children this past year. I learned this lesson with two boys I cared for who have a decent age gap between them. The younger one is autistic. The older one is not.

And they did not have that relationship that Caley and I had always had. Far from it. As a sibling myself, it made me really upset to see this, and I really had to wrack my brain, to see what my parents had done (and what Caley and I had done!) to make sure Caley and I got along.

Once I stopped to think about it, I realized there were two big factors that helped Caley and I be so close. For one, our parents rewarded me pretty intensely for being a good big sister. I got pretty constant praise for being a good sibling (to the point of going too far, because society started praising me simply because of our narrative about disability, but that's not the point of this post). For another, something my parents had nothing to do with, Caley was someone I could play with. She was my best playmate in the whole world, and so, of course, she was also my best friend.

So recently with the big brother, I tried these things. I started rewarding him for good big brotherly behavior (small amounts of candy on days when he's behaving really well) and taking him to contexts where he will be rewarded (like his brother's therapy, where he's allowed to go back with him, but only if he's a good helper for his brother). At first I was concerned about the candy, worrying that the big brother would learn to be good to his little brother only when bribes were present, but I no longer worry about that. Because the candy is just a bridge, an incentive to get him positively interacting with his brother, and he's actually learning from it and realizing that positive interactions are possible.

The other thing that made my sister and I close was (that parents can influence, that is) having Caley as a playmate, as I said. And this one seemed impossible for these two boys. Between age gap and autism, the little boy couldn't keep up with his big brother enough to participate in his games (although I tried helping him, it wasn't a long term solution, nor did it go particularly well). If I wanted them to play together, I had to teach the big brother how to play his little brother's games.

So next time I was in the car with both kids, and the little brother was scripting with me, I started teaching big brother how to script. And now big brother scripts with his little brother unprompted, and they both enjoy it! It's a way for positive interaction. Even if your child doesn't script, there are still ways to play. The point is, you may have to be the facilitator here, if they don't play already, and teach the neurotypical child how to play their autistic sibling's games. (Even if it's teaching the neurotypical sibling to interact by lining up their own set of toys.)

Another, of course, was finding new games that both kids could play - that were neither games specific to either child's desires. For us, that's been hide and go seek. (An episode of Peppa Pig, by the way, taught the little brother how to do this, more or less, although it's not exactly traditional hide and go seek.) And so now they have even more games to play together, and now that he sees his little brother can actually be fun, his big brother is starting to interact with the little brother more and come up with even MORE games!

Around this same time, by the way, I started having one on one chats using my website explaining autism for kids, with the big brother to teach him about what autism is. I don't know if that's contributed to the shift in their relationship, but on the off chance it might have (or in general), I would recommend making sure your child understands what autism is and how being autistic affects their sibling. I've been using the videos on this website, breaking them up into a video a day, with the big brother. Though he wasn't thrilled about being forced (yes, I did have to force him - I debated that, too, but I'm moving soon so the deadline for me to be able to teach him these things made me decide that I had to enforce learning), he really has learned a lot and grown a lot more understanding with his brother as a result. Just in case that is what did the trick, here's my website that I used for that:http://aseforkids.weebly.com/

The last thing that you can do is get your child a sibling penpal with another sibling of an autistic child. If you're interested/think they would be, of course. It's a good way to help the neurotypical sibling feel special, to learn from other siblings, and to feel less alone. (There's a program for autistic kids, too, if you think your autistic child would be interested/up for it.) Wait times for the program are longer than I'd like (they vary - for the sibling program I would need to wait a bit to find someone to pair with a child, for the autistic program I'm already actively looking for pairs right now), but it is free and I do offer it.
http://www.autismspectrumexplained.com/penpal-program.html

Hope this post helps all of you! Contribute your own advice and questions down in the comments!
-Creigh

[Photo is of Caley and me, appropriately, playing together. We're swinging in the back yard under our sycamore tree. My mouth is open (I think posing for the picture, but I might be screaming with joy) and Caley, in her little pig tails, is just smiling in contentment. I'd guess that Caley was about 4 or 5 and I was 7 or 8 in that picture - and having a great time!]

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Claims about Autism Interventions

7/13/2014

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Claims of miracle interventions for autistic people are wide-reaching and a veritable conversation opener for any autistic person or parent of a child on the spectrum when they reveal the diagnosis. The interaction typically goes like this.

"I am/my child is autistic."
"Oh, really? I'm so sorry! Have you tried [fill in the blank therapy/medication]?"*

Ignoring the part where the assumption is made that being autistic is something to be pitied, it can be very bewildering for autistic people and parents to sort through these many interventions. Whether motivated by legitimately interest in the intervention or interest in ensuring the speaker is not spreading an inappropriate intervention, when you're constantly confronted by questions such as these, it's important to have a resource to turn to about these claims.

You see, there are high stakes at play here. Yes, some interventions are helpful, and can even be life changing. But far too many are ineffective or, worse yet, actually cause physical harm to the very people they claim to help.

That's why we need such a resource. And, thankfully, this morning I found one. From effectiveness to potential harm, they've categorized a long list of interventions on this page. If you're interested in interventions, or just interested in making sure others don't recommend harmful ones, I recommend reading.

http://www.researchautism.net/autism-interventions/our-evaluations-interventions

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I'm Not a Burden & Neither Are You

7/11/2014

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A lot of people in the Autistic community and those who support the Autistic community often forget how the same issues that affect autistic people also affect other neurodiverse people. Many times neurodiverse people can feel like they're a burden because they're made to feel that way by their society, culture, peers, etc. What can make it worse is that sometimes being neurodiverse may mean that we contribute to society in different ways.

Unfortunately, many in society do not see our contributions as being contributions. You don't need a job to contribute to the world. You can contribute just by being there, by giving a smile, by teaching society how to think and understand differences, by helping give society a purpose.

People need to remember to not let society say that these aren't contributions. People need to remember that even if they contribute in different ways than what society normally talks about, that is still a contribution and they should not feel like a burden. And those who are neurotypical should recognize these contributions and try to help society as a whole see them, too. And make sure to confront the idea that contributing differently makes you a burden.

-Caley

[Post dictated by Caley, transcribed by Creigh]

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Leaving is Hard

7/9/2014

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When I picked the child I care for up from camp today, his camp counselor (and school speech therapist) said to me, "He's going to miss you when you leave."

I'm sure that was said as a compliment, to say that I've been a good caregiver. But the knowledge that he's going to miss me, that he's going to be confused and upset that I'm no longer there (I'm hoping that we'll do such a great transition that that won't be the case, but it's a very legitimate possibility)...it HURTS, you guys. I know I'm leaving to get more training to help autistic kids like him. I know that. But that doesn't make the knowledge that I might be hurting him by leaving hurt ME less.

On the positive side, today has been an absolutely AMAZING day. And that knowledge, the knowledge of how far we've come...that's the only thing that makes me feel a bit better.

Sorry for the down beat post you guys, I'll be back to up beat autism understanding posts later.

-Creigh

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Self-Advocacy is Only Half of It – On the Importance of Listening

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