A Letter To Disney

Over the last few months, I have been both amazed and greatly encouraged by the amount of autism awareness that is starting to be raised in the private sector. While other parts of the world have certainly been ahead of us Americans in that sense, we are starting to realize the potential of a workforce that companies have not given much of a chance in the past.

Disney has been a regular source of enjoyment and bridge-building for many of my clients, regardless of their demographics. Being a Disney kid/adult myself, I personally know what impact it has. I remember the joy (again, as an adult) at seeing an African-American Disney princess emerge on the scene with The Princess and the Frog. The Disney brand has significant clout in the world, and that includes the autism world within it. For many of the families I’ve worked with, being familiar with Disney gave a clinician a much greater chance at earning the trust of our clients.

The article below is from an autistic adult who now speaks with corporations and organizations to make the case for hiring his demographic. He also does an aspect of what I like to do, which is train the current workforce on working with autistic employees and coworkers.

A Letter To Disney

The Bridge: About Behaviors

This is a topic of interest for me, so much so that I created a training for professionals on dealing with “difficult” behaviors in clients. When it comes to autism, difficult usually refers to behaviors that are inconvenient, unnerving or harmful, or possibly embarrassing.  They range from persistent flapping to self-harm, and cover all points in between. The bottom line with all of them, however, is usually the same with families and adults who work closely with the clients: they would like the behaviors to reduce or stop.

In the training, I challenge my colleagues to become detectives first, and to view the behaviors from the eyes of our client. So, let’s take a new client, Paige. She is 14 years old, and nonverbal. She does not yet use any devices to communicate, aside from occasional pictures similar to PECS.

Paige often takes off running for no apparent reason. Sometimes it is just into another room, but sometimes it leads to her running towards traffic or out of the family home. Her family have no idea how to stop it and are deeply concerned for her safety. There are two things that need to be addressed almost simultaneously: Paige’s safety and the reasons behind her running.

A safety plan may be set up immediately, and nothing punishing is involved in it. Doors are kept secure, and someone stays with her regularly until the next step is engaged. At the same time, we start walking through a loose version of ABC (Antecedent, Behavior, Consequence) Data collection. This is one of the aspects of ABA that I actually like, because it brings in the detective aspect. We start examining all the events immediately leading up to the bursts of running, and I document them. After a few minutes, a pattern is noted. She tends to run when a large number of people enter the room she is in (about 3 or more). This is especially true if she is given no warning (for example, if neighbors or family members unexpectedly drop by). If Paige did have a device to communicate (or was verbal), I would more than likely get her input as well.

The family and I develop a plan to let Paige know when to expect an influx of people. We also let her know that if she gets overwhelmed, she can squeeze a trusted adult’s hand to let them know that she needs a break. Her receptive language has proven to be high, so we all believe that she definitely understands. This gives her some autonomy to tell us when she is feeling out of sorts, rather than us just assuming. After a few test runs, Paige is able to squeeze to alert her family. Within about three weeks, her running has reduced by over 50%.

For many behaviors like this, there is an underlying reason that we may be missing. It is usually something that a neurotypical individual would never guess, because it is not something that normally bothers us. This is why I like to reiterate how many neurodiverse brains tend to filter very differently from our own. This sets up a better sense of understanding from families and caregivers, and allows them to become better detectives and listen to their neurodiverse loved ones’ cues, whether they are verbal or not.

Next week: The behavior discussion continues with a look at the actions that aren’t harmful, but still baffle many of us. Have a great week, and feel free to email me with any questions/comments at sparcguidance@gmail.com.

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.

New Series

After thinking about it for awhile, I decided to write a series about how I work with my clients. I have met many newcomers to the autism therapy community, some coming into their very first job, and they often hit the ground running with very little knowledge of how to interact with their new client. In the companies that I have worked for, most of the training falls on the lower level supervisors. Unfortunately, they are usually swamped and can’t do full on training until their schedules allow them to shadow or meet with their employees. I know this because I have been the supervisor before.

My hope is that this series of articles will help incoming interventionists and specialists look at their charges not from the standpoint of data collection or trial running, but from the standpoint of relationship building and earning trust. While every client is different, there are some universal truths to interacting with any human being that (for some odd reason) I have sometimes seen ignored when dealing with autism.

I will probably start this early next week, walking you through my experiences as a therapist, interventionist, and specialist. I hope that some of you that are new to your positions and the field get a feel for what sessions can be like, and why you really shouldn’t take a lot of things personal or be too hard on yourself. For those who are “veterans,” I hope to remind you of why you do the work that you do. 🙂

Next week’s first article is: The Approach