The link below is to a very interesting article examining what success looks like for different individuals when it comes to autism treatments. Both members of the field and autistic adults were asked to answer, giving a pretty wide range of responses.
It made me start to think of what success looks like to me in this regard. For one, it involves a strong support system. This is something that everyone seems to agree on. The family and the community in general has to be open to learning, helping, and expanding opportunities. This is a piece that many autistic adults have said (quite loudly) is severely lacking overall.
I think another marker for me, especially with younger kids, is if they start to engage with others. It doesn’t have to be much, but I always loved the moments when a client figured out that a form of communication (be it a sign, picture, written/typed word, or vocalization) is the gateway to getting what they need. Even a brief moment of eye contact (because I have never been in favor of forcing a staring contest) can speak volumes if the family members and friends are willing to learn the autistic individuals’ language.
What do you think of the viewpoints from this article? Who do you most agree with? Do you agree with any of them?
On Saturday, I had a chance to do a “paint and sip” afternoon. I wasn’t even going to go at first, but was talked into it by a childhood friend of mine. The experience gave me an interesting look at creativity, our self-identity, and how willing we are to deviate from societal norms.
For these events, we are usually given a beginning sketch, and then are walked through how to essentially duplicate the picture. It’s a genius idea, because the steps are explained in such a way where you would have to really try to mess it up. It’s nearly fool proof. This picture, titled “Golden Goddess,” featured a black woman’s facial outline and shoulder. Everything else would have to be painted in.
I started deviating a bit from the start. I mixed the colors for the skin tone a bit differently, and I decided that I wasn’t going to give her a curly afro like the example because I wanted her to look more like me. I also wasn’t going to be too crazy with her makeup because, again, that wasn’t me. I found myself wishing that I had blue instead of green paint so that I could make purple and really let loose on the color scheme.
Strangely enough, it never crossed my mind to ask for blue paint.
I knew what elements I wanted to add to the painting, but I didn’t because I didn’t feel that I had the resources or access to them…even though there was plenty of blue paint on one of the counters at the front of the room. I didn’t think to ask and instead just sat, wishing.
While in the midst of this mini-crisis, I starting looking at the others’ paintings. Most were following the instructions to the letter. Then I saw one woman who had clearly decided to go a different route. Her finished goddess ended up with pinkish-red bushy hair, a green top instead of a red one, and roses around her instead of circles. It looked awesome.
My finished goddess looked like a halfway point between the example and whatever I wanted. I love her, but I know that she can be more.
I then started looking at more pictures from the business of other painting parties. I was genuinely curious at how few people tried to deviate from the presenting pictures. There were several where I thought, “Oh, I would’ve added these colors, maybe changed that background into this.” When it came to the painting of a black woman, though, I saw the highest number of deviations to have the subject look more like the painter. So why didn’t I see such deviation with the landscape or object painting classes?
No, I’m not answering or looking to answer that question. This is more simply food for thought. How willing are you to paint outside the lines? Do you prefer to follow the norms, or pivot a little? How much do you pivot? How does art help one deviate a bit more than usual? If you know what you want to create, how willing are you to pursue it?
I’ve said this briefly before, but I have seen this line crossed so many times now that I decided it needs an entire post. Just to forewarn you, this may turn into a bit of a rant because this is a subject near and dear to me.
Spiritual guidance (SG) and therapy are NOT the same thing. They are also NOT interchangeable.
Speaking as a guide, I would never attempt to diagnose or treat a mental health issue. Even with my background in counseling, I am not licensed, so this is not within my scope of active practice. If I feel that therapy would benefit the client, I will readily and gladly recommend it. Having opportunities to engage in both SG and therapy can be extremely beneficial; it allows for both mental and spiritual healing with professionals working within their proper boundaries and areas of expertise.
Speaking from the experience of working as a therapist, I get alarmed when I see guides start to act more like therapists. Guides have a unique duty and focus, which is the spiritual well-being of the client. This is not the same as the mental well-being. There are many aspects of spiritual practice that, in a mental health setting, may appear to be signs of pathology. Visions could equal hallucinations. A bond with nature may be seen as delusions of grandeur. I like to use the “harm question” to distinguish the two: is this person’s beliefs or experiences causing harm (of any kind) to themselves or others? If not, SG can continue. If so, I will get other professionals involved promptly.
The other issue with blurring this line is the flip side of the coin: guides who are unable to recognize mental health issues at all. I have seen a self-proclaimed guide completely miss what to me were obvious signs of depression in a client, and instead they chastised the client almost relentlessly for being “unmotivated.” The client was called lazy, insubordinate, childish, etc. The “guide” threatened to abandon the client and stop communicating with them if they didn’t do as they were advised.
This is not good therapy or spiritual guidance. Honestly, this isn’t even respectful. This is bullying. Rather than punishing a client for not following instructions (which, by the way, you shouldn’t be spending your time as a guide doing, anyway), a guide would seek to understand the roadblocks that the client is putting up. A good therapist does this as well. There is always a reason for blockages, and they are rarely there just because the client is “lazy.” Punishing the client by fussing at them or threatening to basically abandon them is not going to get you to the reason. It only alienates the client or leads to dependency with the client constantly trying to please the guide. The client in this example should have been referred to a therapist to address the depression symptoms.
I could probably go on forever with this post, but those are some of the bigger issues I’ve seen when two different practices/approaches collide in ways that they shouldn’t.
Can you think of other ways that these lines could be blurred, and/or how to prevent this from happening?
Don’t worry, I didn’t miss the fact that April is Autism Awareness Month. Now that I’m settled, I wanted to give my own take on the month.
I saw this quote a few days ago, and it stuck with me. I’ve experienced this recently myself, and it does make you laugh when people think that they know you and actually don’t have a clue.
This was one of the first lessons I learned working with special needs children, particularly those on the autism spectrum. I had to learn that a vast majority of my clients knew exactly what they needed; the problem was that us “experts” weren’t listening. We were assuming that we knew what they needed. So naturally, we were met with resistance. For some of these so-called experts, the solution to that resistance is to push back harder, to literally break the spirit of the client so that they conform. Even in the beginning, I had an issue with this.
Instead, I chose to drop into the client’s world. I wanted to see how they saw things. While I can probably never know exactly how the world is to them, this simple state of being made me more aware of their awareness. The repeated actions aren’t mindless, but an attempt to regulate (same as how neurotypicals have quirks like biting our nails when nervous…except here you’re nervous most of the time). In doing this, I also quickly learned to never talk about them (in a negative way, especially) within earshot, because just like anyone else, they can tell if you’re talking about them. They may not be able to verbally tell you, but trust me, it will come out in some way. I’ve had to remind many parents and peers about this.
Finally, having said all of that…they can tell you more about themselves that I ever could. In these final days of April, I urge you to follow an autistic individual’s blog, Instagram, Tumblr, etc. You will see, hear, and feel the struggles and triumphs from those who live it, rather than those who work with them. I’ve included a few I follow that are awesome people (and yes, the number of women listed was kind of on purpose). If you are on the spectrum and have a social media presence (or know someone who does), leave your links in the comments as well. I’m going to try and highlight more of your voices going forward!
Slipping under the radar of nearly everyone I know who works in the autism field, Netflix debuted their show Atypical a couple of days ago. I literally stumbled upon it thanks to an ad before a YouTube video. So today, I watched the first few episodes.
First, I was happy to see that the lead character, Sam, kicks off the series with the decision to get himself a girlfriend. Often in media depicting autistic individuals, they are presented as either asexual, child-like, or something far more sinister. It was nice to see a teenager on the spectrum in media who thinks like a teenager…because, you know, they do that.
Second, it is rare to get a slightly more realistic look at the dynamics of the family like this. This is a bit more raw. You see the mom who is terrified that neither the world or her son are ready to meet each other, the dad who is trying to find his place in his son’s life (and to some extent, his wife’s life as well), and the sister who is embracing her inner Daria while still showing sibling love (and annoyance) for Sam.
Third, we get to see the world numerous times through Sam’s eyes. This is becoming more common in these kinds of narratives. When he gets hurt because of teasing, he doesn’t immediately emotionally react because he is trying to temper the sensory input, which is growing out of control for him. A hurtful sentence (that the girl seemed to think was defending him instead of hurting) pauses the sensory long enough for him to see what’s happening and bolt. I don’t have these sensations, so I don’t know if they nailed it, so to speak.
Fourth, the mom reminded me of so many parents I have met. I’m going to be honest here, just to warn you. On the one hand, I felt annoyance at first because (to me) she was dismissing her son’s desire to be in a relationship by insisting that he wasn’t ready. On the other hand, I still get it. A mom’s job is to love and protect her children, and this mom is trying her hardest to do just that. I could see both sides, and that made the episodes I watched all the more interesting and endearing.
Finally, debate has already started on whether or not Atypical really caught the essence of the life and times of an autistic teenager. So, short review so far: Do I think some things are played up for entertainment purposes? Probably. Does it represent every autism experience? Of course not, nor should it try to. Is it perfect? Nope. Could it be a great dialogue starter? Yes.
I’ve put the trailer for the show below. I would love to hear other’s thoughts about it (the show, I mean). I do plan to continue to watch it, and we’ll see if it gets a second season.
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.
So first, if you haven’t seen the Seriously TV “Shutting Down BS about Autism” segment, here it is:
This video caused a firestorm in the comments on both Facebook and YouTube. It wasn’t necessarily because of any factual information that was or was not presented (although that came up as well), but about the fact that many autistic adults felt that Avery, who has autism and is in the still shot above, was not given much opportunity to really speak. His dad’s segments were often cut in over Avery’s. Dylan, who runs these segments, explained that he wanted to make sure the message got across and that it may have been difficult doing this with Avery alone. His explanation, as you can guess, did not ease the firestorm.
My take: I have seen other channels do this much better with regards to letting autistic people “shut down the BS” themselves (see BBC’s Three video “Things Not To Say To An Autistic Person”). Granted, these are all people who are very much verbal, but it is a step up from the Seriously TV attempt. Even better is basically any interview with Carly Fleischmann, who is considered severely autistic and cannot speak (she uses a keyboard). Better still? The countless blogs and vlogs from autistic people themselves; those are first hand accounts at their best, and they run the gamut as far as diversity on the autism spectrum. A couple of my neurodiverse followers with awesome blogs include: David Snape and Friends, Anonymously Autistic, and Neurodivergent Rebel.
Bottom line is that I understand what Dylan was trying to do with this segment, and I think that if he can take and listen to the feedback, he could make this into an amazing series. Personally, reading the feedback made me think quite a bit about my own business and how to avoid those same pitfalls.
What do you all think? Did the “Shutting Down” video completely miss the mark? What about the BBC Three one?
Yes, I’m going to talk about what just happened in America tonight.
As my friends and I on Facebook started feeling the slow, horrible feeling of someone punching us all collectively in the gut, a young white man (who says he didn’t vote for Trump or Clinton but someone else) jumped into one of the conversations.
He essentially said that we (the minorities) were “overreacting” and need to get over it.
Naturally, he got verbally destroyed.
Despite this, though, there was still more pain than anger. The pain that, even now, there are those who didn’t even vote for Trump who STILL cannot empathize with those of us who have been insulted or ridiculed by the man who is now President-elect. I thought about my clients more than anything, and they run the gamut: some of them are minorities and autistic, others white but severely delayed, and others female but strongly dependent on the Affordable Care Act in order to get medical services and equipment. If Trump and his surrogates keep to their words, all of my clients are about to be negatively impacted.
So no, I cannot afford to just “get over it.” Never mind me as a black female who has also benefited from the ACA…my clients, the kids, are now at risk. They are all under the age of three, and they are all about to learn just how much this country doesn’t care about them.
I will not just “get over it.” Too many are depending on me to continue to support and fight for them. They are the next generation of Americans (and yes, they are all Americans); they deserve a shot at a hopeful future. I will continue to do my best to ensure that they get that.
I believe it’s been about three or four months since Autism Speaks co-founder Suzanne Wright passed away. I have a very…I’ll say tightrope-like opinion of Autism Speaks. Before really looking into the organization, I supported it just as hard as many in the autism field do. I even helped organize a team at my previous job to participate in on of their walks.
As I started reading and speaking with more autistic adults, however, my views changed. I started seeing the true intentions behind the Light It Up blue campaigns and such…and I did not agree with it at all. I was never in favor of trying to “cure” autism, as I don’t look at it as a disorder that needs to be wiped out. They did, and so I quickly distanced myself and have not participated in any of their events since.
An amazing blogger that I follow, anonymouslyautistic, posted about the recent change of rhetoric that has surfaced on the Autism Speaks website. Apparently, they are no longer set on finding a so-called cure. I can’t help but feel that this has to do with a changing of the guard, so to speak. I checked the site out myself, and yes, they seem to be shifting focus. This could be good for everyone, but if and how Autism Speaks is accepted into the autism community is still in the air. Those who funded it for the sole purpose of finding a cure will probably withdrawal their money. They still have to mend the bridges with those they have severely affected with their words and previous stance. Like many, I am waiting to see how they move forward before putting any real support behind them.
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:
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.
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.
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).
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.