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.

The Extra Bridge: The Workers Listen

I’m adding in an extra chapter to this series because of what went down on my personal Facebook last night.

Knowing that some of my Facebook friends are practically ABA zealots, I decided to write a segment I sometimes call “Unpopular Opinion.” In this one, I put the ABA community to task for not appearing to listen to the autistic adult community when they give their critiques and suggestions for ABA and how it is executed. I also noted how ABA has monopolized the autism field, leaving little room for any other approaches. I then ended with a dig at the new healthcare bill by Republicans, adding that if it goes through then all of this may be a pointless rant. Then I sat back and waited for the incoming torpedoes.

They didn’t come, at least not exactly.

One person did come on defending ABA as the only evidence-based practice. I then explained down thread what I called the “Catch-22 Carousel.” ABA gets funding and put onto insurance because it is evidence-based, which takes away from funding for other approaches to conduct research to…prove they’re evidence-based. That aspect of the conversation stopped soon after I made that point. When they asked where the research was, I pointed them to Stanford’s Annual Autism Symposium, which takes place in about two weeks. They genuinely seemed interested in attending.

What really made the conversation, though, was the intrigue from others over other parts of the post. I had a great conversation with one former coworker about the effects of the healthcare plans on autism services (which included our job prospects), and another conversation about offering more support to autistic adults and what that should look like (employment/workplace support was high in priority). Just about everyone agreed that there should be a variety of therapeutic services for families and clients to choose from, and to not have that is a detriment to our overall goals and why we entered this field to begin with.

Most of my Facebook friends are ABA enthusiasts, so their silence did not surprise me. I was actually impressed with the ABA Specialist who wanted to hear more about the research into the other approaches, as opposed to just ignoring or shutting down when I made my point. Another friend from back home mentioned the PEERS approach, which I had never even heard of. My rant led to a new approach (at least new for me), and I am now going to go learn more about it.

Some of the parents, meanwhile, simply liked, loved, or thanked me for the post.

The conversations that sprang from that post made me think beyond my viewpoint, go and research some things as I was replying to others, and led me to new ideas. Sometimes speaking your truth can lead others to do the same, and sometimes, everyone listens and learns something in the process.

 

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 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.

My Thoughts on ABA

I just realized that I have never given my personal viewpoint on the current poster child of autism therapy, Applied Behavior Analysis. I think this is mostly because I know that I have strong feelings about the subject, and because I was usually surrounded by proponents of ABA and didn’t want to rock the boat. Now removed from it for about a year, I can talk about it more freely and without the anxiety the environment gave me. Please understand that this is my personal opinion, grown from my personal experiences in the ABA field.

I worked at an ABA-centered organization for a few years, so my thoughts do not come from a lack of exposure. The organization actually started out with a different model (and one of my preferred models), the Early Start Denver Model. Then, as Kaiser became more involved due to funding, the organization started to shift gears quickly. I gave it a chance, I really did. I listened to its proponents (some of which are/were friends of mine), got trained in several aspects of ABA, and created treatment plans based on it.

And I eventually hated every second of it.

Okay, hate is a strong word. Let’s see…each day that I worked there took a tiny piece of my soul away. Yikes, that sounded worse. It was true for me, though. Let me break down the reasons why I tried and eventually decided ABA was not for me or most of my clients:

  1. The obsession with fixing what isn’t broken. This is the basis of nearly every issue I have with ABA in general. I have never heard so many references to fixing someone as I have in that field. It is problem-focused almost to an extreme in some cases, and much of my training was solution-focused. That led to an instant clashing of values. I don’t believe autistic people are broken, they just have a different experience with the world.
  2. The therapist/interventionist/analyst is the expert. Um…no. A former boss of mine (who was deep in the rabbit hole of ABA) actually said of our clients’ families, “They’ll listen to us…we’re the experts.” Before I could stop myself, I blurted, “No, we’re not. The client is actually the first expert of themselves, then the parents are a very close second…we’re around third.” That boss and I butted heads from then on. Yes, I’ve studied a lot about autism, and I’ve had many autistic clients. Guess what, though? “If you’ve met one autistic person…you’ve met one autistic person.” In other words, we aren’t experts at all. Guides, maybe. Advisors, perhaps. Experts on autism? Not even close.
  3. Disregard/dismissal of any other approach. I may not be a fan of ABA, but I still respect it as a discipline and a psychological approach (even though quite a few of its supporters don’t want it associated with psychology because I guess psychology isn’t considered a true science…as I sit here with my two science degrees in psychology and counseling). Sadly, the other approaches, some of which I have seen work very well with clients, were met with almost mocking ridicule during my ABA experience. The often-repeated reason was that ABA is “evidence-based” and basically everyone else isn’t. This is a sad catch-22 to me: no funding is given to other approaches to give them an evidence base, and more is going to ABA because it is evidence-based. Good luck getting off that carousel right now. Also, the testimonies I see arising from the adult autistic community suggest that the psychological harm being done by some of the execution of ABA is real, and those voices are largely being ignored by the ABA community (at least to me).
  4. It simply does not fit me or my beliefs with regards to autism. Again, this is all my opinion, based on my experiences with the ABA approach. I don’t agree with the approach in general, and that’s fine. We can agree to disagree. What bothers me is the absolute takeover of ABA (along with “cure seeking”) in the autism world. Actually, it scares me. I have never seen such a monopoly occur in a field (except maybe Apple and the iPod), and when monopolies occur, innovation can be stifled. I have seen colleagues with amazing ideas get shot down repeatedly in ABA-centered organizations, their insights rendered mute. Then these same organizations wonder why they can’t keep solid employees.

Look at it this way: say you need to see a therapist. You got to your HMO doctor to ask for a referral, and they’re happy to give you a list. You notice that everyone on the list is a psychoanalyst. You say, “Um, this is great and all, but I really wanted a cognitive-behavioral therapist.” The doctor replies, “Nope, this is all we have.” You go to your insurance company, and get the same response. You have to choose a psychoanalyst because that is all that is offered. Your chances of getting anything out of those sessions just dropped significantly before you even walked through the door because you didn’t get to choose for yourself. Welcome to the current state of the autism treatment world.

This is what led to my difficult decision to work on the fringe of the field, so to speak. My work is now more developmental in nature, and with a much younger client base. My methods of building trust and a relationship first and foremost, of making the sessions fun and engaging, and involving the family whenever I can have not changed. I am much more happy here. Again, I am not to the point of chanting “down with ABA” (at least not yet); I think all of the different approaches can work in harmony.  However, there needs to be some additional educating to some of ABA’s followers on working with the autistic population, and other approaches need the opportunity to shine again without being shunned by the majority. Yes, ABA is now the majority approach. The ABA field can no longer use the “we’re the underdog” excuse.

No, you’re not. You’re the monopoly now.