LA Versus Bay: Autism

I am FINALLY in LA and settling in while scoping out the apartment scene. I have also been taking the time to look at the various agencies that focus on or at least include autism therapies in their offerings. I have already seen some interesting differences between agencies in LA county, and agencies in the Bay Area, and I’m sure more will pop up (which I will definitely write about). I will stress that this is just based on personal research I’ve been doing on agencies in LA (both before and after moving) and the Bay Area (which I have worked in and for); this is by no means comprehensive or an absolute of the offerings of these two areas. It is literally a “first impressions” kind of deal.

  1. Wraparound services and the concept of such seem to extend beyond the agencies themselves in LA. They tend to partner up with other agencies a lot more, mostly because the agencies down here appear more specialized in their missions. I’ve noticed that in the Bay, many agencies (at least the bigger ones) tend to be one-stop shops in a sense; for example, they will offer intervention or behavioral services, speech therapy, and occupational therapy in one organization.
  2. Because LA county is so freaking huge (and a pain to drive in), the agencies are much more narrow in their geographical scope here. They often have to limit themselves to certain communities, and even demographics within those communities. In the Bay Area, agencies tend to have more geographical reach and usually overlap in coverage areas. At my last job in the Bay, I had clients from Mountain View, to south San Jose, through Milpitas (google a map of the area, and you’ll see what I mean).
  3. The diversity of the type of agencies, at least for now, appears more vast in LA. Up north, there were no known agencies that utilized the Floortime/DIR method, and this was one of the reasons why I felt so left out of the autism circle there. ABA exclusively rules the land. While it also corners the market in LA county, I have found two agencies who use the Floortime method (basically unheard of in the Bay Area), and both have been in operation for well over a decade.
  4. Community outreach and connection is on a higher priority in LA. I’m not saying that it doesn’t exist in the Bay Area, because it does. I am saying, though, that it is more obvious in the agencies I’ve researched in the LA area. The agencies down here overall (and not just special needs ones) tend to create and hold their own conferences, go into lower socioeconomic areas/neighborhoods, and communicate more readily with those neighborhoods. Why? Because individuals in those neighborhoods rose up and decided to carve such agencies into creation themselves.

Overall, the LA area appears to operate a bit differently than the Bay Area, which means I will have to learn the lay of the land first before really striking out to plant my business here. So far, though, I am excited with what I see.

An Autism Wish List

I’m traveling/on vacation right now, but I wanted to share an amazing post with everyone about Autism Acceptance Day. The author, who is an autistic woman, made a wish list of what she hopes to see for autistic individuals in the future. Number four particularly resonated with me, as I know that I am still working on this due to being a product of my environment when it comes to autism services. The goal of “normal” is still very much the norm, so to speak, and I would like to help change that, starting with myself. I am still a work in progress. I may do an post just on this subject in the future.

Enjoy!

https://anonymouslyautistic.net/2017/04/02/autism-acceptance-day-wish-list/

The Bridge: Behaviors, Part 2

Last week, I talked about the more difficult behaviors that can sometimes pose a danger to autistic individuals and/or others. There is another category of behaviors that are pretty much a benchmark of what we consider to be autism, and those are the ones I want to address here.

In the autism world, these behaviors are often referred to as stimming behaviors. They can range from verbal (repeating words, making unusual sounds), to physical (rocking, jumping) and all points in-between.

Let’s go to a new client for a moment. His name is David. David is 7 years old, and his parents are a bit flustered at how he often waves his fingers in front of his face. He will do this for hours if they let him (which they really don’t want to), and they want it to stop because it is keeping him for getting through the school day. It also draws attention when they are out and about. He always seems to get very excited when he does this.

The reflex move, of course, is to just tell him to stop. If they are particularly frustrated, the parents may physically move his hands to his sides or threaten to take away his favorite toys (Legos). This only makes him frustrated, which leads to either a meltdown or David aggressively doing the behavior even more. The truth is, there is a very simple reason why David does this action.

It makes him feel good.

There used to be a notion that these behaviors were a sort of torture for the client, and that the therapist/interventionist was “freeing” them from it by stopping the behavior by force (physically, verbally, or otherwise). Now that more and more autistic adults are speaking up, we are learning (or at least I hope we are learning) that the stimming behaviors are actually relieving the so-called “torture.” The difficult part for our clients is navigating an overstimulating, often unpredictable world. In my work, these behaviors signal that the client is trying to calm and steady themselves in the best way for them. When I see them, I want to find out why the behavior is happening. Either something in the environment has shifted, or there has been a build-up of uncomfortableness for the client.

Or, you know what? Maybe they just felt like being happy in that moment.

Much like the previous entry, a bit of detective work can go a long way. After doing some data collection, we discovered that the finger waving would often increase just before going somewhere that involved being in a crowd. We gave him a fiber optic wand as a possible sensory replacement, which he loved. The family also started giving him plenty of warning as to when they were going to go out. We even went a step further and created mini social stories about frequent places they visited (complete with pictures from those places). While David still waves his fingers sometimes (especially when excited), it has decreased along with his anxiety. We didn’t stop the behavior because it was “wrong,” we adjusted it and the environment so that the anxiety that causes the behavior would decrease.

To put it more simply: if someone bites their nails, forcing them to stop will just make them either do it more in secret, or lead to them switching to another tic. Uncover the source of the emotion behind the action first.

Finally, I wanted to share a blog post from another blog that I follow. The author touched on this very subject, and it is a great way to hear about stimming behavior from an autistic adult.

Oh the Ways We Love to Stim

Next week: About The Siblings…

Teaching The Teachers

Last week, I had a team meeting with staff that I don’t see on a day to day basis. Being independent contractors, we are all rarely in the office. Opportunities to interact and review case studies are welcomed meetings.

At one point, I was discussing a case of one of my younger kiddos, who has Down Syndrome. When I causally said “my Down Syndrome client,” my supervisor corrected me by saying, “You mean your client with Down Syndrome.”

I paused, and then nodded. “Right, sorry. I guess my autism references rubbed off, because I often say ‘autistic adults’ or ‘autistic children,’ because the adults on the spectrum I’ve talked to prefer I say it that way.”

You should have seen the shock that swept across the table. “REALLY?!” they all exclaimed. This was a table of developmental specialists, speech therapists, and occupational therapists who have all had at least one autistic client at some point. This was a newsflash for them.

This is by no means a definite across all autistic adults, because of course I don’t know all of them. What the above exchange does highlight, however, is the continued disconnect between intervention workers/programs and autistic individuals. I myself did not realize how much of a disconnect there was until I started researching ABA and how clients view the approach versus how ABA proponents do (spoiler alert: there is a HUGE disconnect). I then started looking at the different agencies and organizations that focus on autism…no signs of any autistic individuals in the agencies’ upper administration, even as an advisory position.

The organization I contract with is not really focused on autism, so I sort of give its staff and workers the benefit of the doubt. For more obvious ones like Autism Speaks, though, I think it is a warranted criticism. How can you properly support a group if you don’t include them in your organization? I’ve made a similar comparison before, but to me it is like creating the NAACP (National Association for the Advancement of Colored People), and then having an all white board at its head.

Bottom line, I’m glad to have shared that insight with my fellow professionals, but in reality, I really shouldn’t have had to.

The Bridge: About Eye Contact

One thing that I have noticed in the autism field is that there are very few autistic voices. This is unfortunate, because as workers we can learn a lot from those who have gone through the very therapy that we are now giving. Listening to the experiences of those on the receiving end is not just a good idea business-wise; in our field, it is just plain humane.

When it comes to eye contact, the main point that I have heard from autistic adults is that it is simply not easy for them. It is not a matter of being insubordinate or even stubborn, it is just difficult. I myself can attest to this: I have a hard time with eye contact as well. I often how to remind myself to do it, otherwise my eyes will just dart everywhere else. For me, it is very intense, and I can see immediately what the other person thinks of me through their eyes. That can be hard to face, because no matter how nice their words are, their eyes give them away.

So when I see interventionists and specialists trying to get eye contact by force, it makes me cringe, hard. While it is a valuable skill that helps you with nonverbal cues, forcing anyone into it (especially by physical restraint, which sadly I have heard of occurring) is just wrong.

I have to make eye contact enticing, something worth the action to the client. So, I hold up a desired object to my face, preferably aligned with my eyes. With Peter, it took a few times, but he eventually met eyes with me. I thanked him and gave him the object. I didn’t pull the object away if he didn’t make eye contact, because I knew he simply wasn’t comfortable enough yet. Once he was, the eye contact became more frequent. Eventually, he started looking at me first and THEN the object, indicating that he would like to have it.

Again, the key point was that I did not force him. I never held his face in place. I never punished him or withheld an object because he didn’t make eye contact. I didn’t want to punish Peter for doing what feels comfortable to him. I did want to teach him that he can ease out of his comfort zone (in his own time), and that there were good things to be had by doing so.

This simple action will now become the baseline for any other work going forward. Eye contact will lead to more interactions, and to the beginning stages of speech. If at any point I see Peter’s eye contact drop back into his comfort zone, I know that I either pushed too much or he simply needs a break. Either way, I take a step back (sometimes literally). In all of this (and I cannot stress this enough), I want to make sure that these initial steps are taken with care and an open mind. This will be important later, when the more challenging behaviors emerge.

Goal of session three: Start eye contact, while maintaining a suitable comfort level

Next week: We will start looking at some of the behaviors that “scare” newcomers to the autism field.

The Bridge: 3,2,1…Contact!

Last week, we met our new client and collected as much information as we could on them. Among the data that we gathered was the fact that they LOVE toy trains. So, guess what I brought to the next session?

Peter likes to line up the toy trains, and then rearrange the order. He gets very excited whenever he does this. Rather than deter him from the activity (which is sometimes the first instinct), I decide to take a different approach.

First, I do not give Peter all of the trains that I have. I keep at least three of them. When he starts lining his trains up, I start to do the same and match his enthusiasm. In fact, I may actually get more into the trains, though not enough to disorient him. While doing this, I don’t immediately interact with him. This is only the second session, and as a newcomer I do not have that privilege just yet.

Then, it happens.

Peter pauses and makes brief eye contact with me…but it’s longer than any time previous. He then goes right back to his trains. My immediate response is: “Peter, you looked at me!” in a quiet but enthused tone. With this I achieve two things: I acknowledge his communication attempt, and I indicate that I am happy with this action. After that, I go right back to my trains as well.

One of the biggest problems I see here from Interventionists and Specialists is a lack of patience and a need to perform. This is especially true if a parent/caretaker if observing the session. It’s normal to feel this way, to feel nervous about how the entire family is viewing you, your actions, and your expertise. It is important, however, to remember why you are there, and to trust your intuition. When reviewing video with workers after their session, or in feedback meetings following sessions, the workers often knew what they should have been doing, but became intimidated by what they thought the family wanted them to do. If you feel this happening to you, don’t be afraid to have a conversation with the family about what the expectations are. Are there certain therapeutic approaches that they prefer? How willing are they to try other possibilities? If the client is verbal, you can also ask them. I have had treatment plan meetings where the clients (in my case, autistic preteens) had a say in their goals and their progress.

Back to Peter. More than likely, I will not push him much further beyond eye contact on the second session. I will also make a point to explain my method to the parents so that everyone is on the same page. That will save you a lot of confusion down the road: lay a plan out to the family, and review what you worked on at the end of the session before you leave.

Goal of session two: Acknowledgement/contact

Next week, we’ll look at how to build on that “blink and you’ll miss it” eye contact.

PS- The title is an 80’s reference. Can my 80’s Babies guess what I’m referring to? 🙂

The Bridge: The Approach

So I decided to title the series The Bridge, since that is essentially what you’re doing in this line of work. I hope that the series helps not only workers (whether a Specialist, Interventionist, Counselor, etc.) who are anxious about entering into this field, but also autistic people who may wonder why the heck we do what we do sometimes.

The first session is always the scariest one. Here’s the truth: no matter how experienced or confident you are, you’re going to be nervous. It’s a brand new client, and a brand new family. You (hopefully) know that you cannot approach this client exactly the same way you approach others, because you know that if you’ve met one autistic person…you’ve met one autistic person.

So what is the first thing you do? Jump straight into what they’re doing? Parallel play nearby? Redirect them to an activity of your choosing?

Me? I observe.

I usually tell the family that the first session is the introduction session and that I’m taking mental notes. In my silence, I start to answer several questions and make observations. Let’s use a kiddo I will call Peter as an example. Peter will be a composite of several different clients I’ve had in the past. He will also be a younger client since many of you that the series is intended for probably work in early intervention. I will rotate my example clients throughout the series.

So when I walk into Peter’s room, the little tyke is paying me little to no attention. He is walking around, humming to himself, and then briefly makes eye contact. I make a mental note of about how long the eye contact was (maybe one second) and will keep an eye on how many times he does it. He then retreats into a corner of the room, on the other side of the bed. So he has some kind of coping skill; he knows when to remove himself from a situation if he feels anxious or unsafe. I don’t follow him over.

While he is there, I ask his parents for some information: preferred toys, daily routine (I take another mental note if there is a lack of one), gross motor activities (does he do a lot of jumping, running, spinning?), family participation (do siblings engage or not, and what is his usual response?). Is Peter overly cautious, or does he throw fear to the wind?

I’m not writing any of this down, but I am starting to build a Peter profile of sorts in my head. All of us do this to some degree with people in our lives, and I assume that Peter is doing something similar with me. These first impressions set the stage for the entire process, so I don’t want to cause him any unnecessary fear or anxiety. The biggest thing I try to avoid is pushing myself into his safe zone too much. For session one, I just want him to know that I am there, I will be coming back, and that I want to play. I tell him this at the start and the end of the session; just because he’s not looking at me, doesn’t mean he’s not listening.

Goal of session one: Recon

For session two, I plan to come baring items of interest.