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, 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!
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. which are looser around the neck and also feel cool)
- 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.) [Update: Later on we switched to Legos from one of the small sets. Every three snips he got a Lego. It got to the point he was requesting snips! You just have to find what works for them...]
- 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.
[Update: She wasn't great, actually. She insisted on trying to use the buzzers instead of the scissors, even though the child was terrified of buzzers. I ended up advocating for him and as soon as we switched to scissors, it was like magic - he did MUCH better.]
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 (I think it's that it's too tight around his neck) 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.
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!
Update: We went for a 'dress rehearsal' and determined that another thing that should have been on this list is, given that he's scared of a hairdresser's, having the haircut take place in the hairdresser's house instead of a salon.
We learned from experience. And now, after a great deal of trial and error, he actually REQUESTS trims, because he knows that afterwards he'll get to go see a movie! Persistence, listening to his self-advocacy (even if it wasn't in words), and following the keys to a successful haircut outlined above really did the trick!
On the earlier post on Diary of a Mom, where Katie concluded that to 'cure' her sister would be to get rid of the person that she is, a mother commented about how ashamed that she felt that she had not realized this. She said that she had tried everything to cure her son of autism, and now she felt shame that she had ever tried to do so. I replied to her with the following, and then realized that the rest of you could probably use to hear it as well. So here it is:
Don't feel ashamed. We've all been where you are. But what matters most isn't where you've been, but where you're going. My sister and I have to argue with our own mother all the time, because she and our other relatives feel terrible for not having realized all along Caley's own thoughts about being Autistic. Now they read our blog and are pretty frequently ridden with guilt when we talk about Caley's true feelings and experiences, because, well, holding yourself to the standard of perfection is one of those things parents tend to do, never mind that they would have had to read minds in order to know what Caley's now expressing.
But here's what we tell our mom every single time. You didn't know. When Caley was diagnosed, everyone told you to grieve, to mourn for your lost child, to regret all that she could have been and would never be, and to fight autism for all you're worth. (A psychologist literally told her these things.) You believed them. Because you didn't know, and you could not have known based off of the information that you had. Now you do know, and you're acting on that knowledge. And that, that's the important thing. Guilt paralyzes - knowledge empowers.
This picture is the perfect example of this:
In the photo, Caley is plugging her ears and looking afraid, forcing a pained smile for the camera, while I pose happily next to her. We were sitting under a bell tower and told the bell could go off at any moment. Caley was, of course, terrified of the sensory onslaught she was about to experience. Mom and I just thought she was over-reacting. After all, the bell wasn't really that loud...right?
We didn't know. We didn't understand how she felt, how she experienced her world. Back then she was too young to really be able to explain it, and there weren't the Autistic advocates speaking out to educate others that there are today. Not to mention the fact that this photo was taken pre-diagnosis.
These are the types of moments that parents look back on, saying, "How could I not have seen?" But short of being autism experts prior to diagnosis (which few parents are) or mind readers, there's no way to have known. Thinking about an incident like this in retrospect (which every parent of a child on the spectrum has) shouldn't be a cause for guilt, only cause for understanding going forward. And I will add, Caley doesn't blame our mom for not having known, nor do I. (Which is a good thing, too, because I didn't know, either.) She, too, understands.
I would like to add, my Momma's a danged awesome mom. And I'm sure you all are great parents, too.
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 I probably had strep throat. 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 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.
I’m attending a workshop about autism this week, and as I’m sitting there the presenter is talking about ‘rage behaviors’ for people on the spectrum during meltdowns. She lists a number of behaviors I’m perfectly familiar with…and gets to one that throws me.
Internalized behaviors. She says that, though our image of meltdowns is of external behaviors – shouting, throwing things, etc – some people get quiet. They’ll just go and hide under the desk and direct their rage at themselves instead of the world.
The presenter said she prefers those with external behaviors, because it’s so easy for the internalized behaviors to go undetected, and therefore go without help.
“Excuse me!” I said, raising my hand. “Could you talk some more about these internalized behaviors. Because I’m wondering if my sister has them. After she’s been getting melty [her term for almost meltdown-y] for a while, she gets really quiet. She won’t let me talk to her and she goes and hides and shuts down. I never realized that she had meltdowns, and now I’m concerned she might have been having them all along.”
I don’t remember her exact response, but the presenter commented something along the lines of how I’d answered my own question.
Later on that day I told Caley what I’d learned and asked her if she realized she was having meltdowns. She hadn’t known, either. “But you direct bad thoughts at yourself during that time?” I asked her. “Yes,” she said simply. “I just really, really, really don’t like me then.” And then she added. “That may be an understatement.”
It’s hard to help someone avoid meltdowns if you don’t realize they’re even a factor. And, though you may not have to worry about accidental property damage or self-injury, internalized meltdowns as Caley can attest to are still a very bad experience, one we want to help prevent.
That’s it. I just wanted to share the signs of, and mere existence of, quiet meltdowns with you all. Do any of you have experiences, yourself or with your child, with internalized behaviors during meltdowns?
This is just the "best hits" of our blog over at Autism Spectrum Explained. If you want to see the whole thing, head over there!