“Broken Normals”

This debate that is summed up in the video below is pretty much the epicenter of the autism world: “cure/treat” versus acceptance.

It is what separates the different therapeutic approaches, the location and allotment of funding, and cultural response with regards to autism. Do we aim to “fix” autism, or do we aim to accept autism? While I personally come from the angle of acceptance, a sizable chunk of the autism therapeutic community thinks otherwise, and that is evident in where the money is going.

At some point as a society, we accepted other forms of neurodiversity and assimilated them into the flock. Even though discrimination is still present, and laws to protect are still needed, we overall moved past the need to completely erase certain conditions. It took a LOT of work, though, and the fight continues today. I wonder when we will get to that point with autism, and how much education and acceptance it will take.

I may do a much longer post on this subject later, or maybe even a series. Heaven knows the subject deserves it. For now, this is a brief look into it.

VICE News: “Broken Normals”

Quick Tidbits

I’ve been having my own form of writer’s block for the past few weeks. I can’t tell you how many blog posts I have started that now sit idle in the Drafts folder. I will get to them, I promise. In the meantime, I decided to give some practical tips that I’ve learned/been reminded of by some of my new clients. We can always use tips, right?

  • For some of my older clients on the spectrum, a lot of anxiety is reduced when they are given the whole picture or situation first. We tend to assume that they will not be able to process everything at once, but giving information in little pieces (especially if they are directions) can also make them anxious because they don’t know what’s next. What I’ve learned to do is to give the overview first, and then each step afterwards as we hit it. For example: “Okay, we’re going to make lemonade today. We’ll need lemons, water, and sugar so that we can mix them together.” Boom, I just summarized the entire recipe. After I did that, the client walked me through the process, asking when he needed clarification. While he is what would be considered “higher functioning,” he still needed the anxiety reduction.
  • Many kids love the feeling of independently doing and choosing for themselves. Even if it is not a true choice (say, choosing between your two choices), the illusion of choice can be a great asset. I try to give my clients choices whenever I can. Sometimes they bounce the ball back into my court for me to decide, but I offered them the choice, and that goes a long way.
  • To my fellow workers: it is really easy to assume that a parent is just being bossy, lazy, whatever trait you believe you’re seeing that week. Try to step into that parent’s shoes. Most of us get to go home at the end of our day. For those of us without kids, we go home to stillness (most of the time). For our clients’ parents, their challenges and triumphs continue long after we’ve gone home. It’s just a few hours a week for us…it’s 24/7 for them.
  • That being said, workers, know your boundaries. You have to take care of yourselves before you can take care of anyone else. Our clients can pick up when we’re tired, hungry, or just plain pissed about something…and the result is usually a less than stellar session. Parents, we go through a different kind of burnout. We are not just worrying about the well-being and future of your child; we often have several more families we have to put equal energy and time into (or dozens more if you’re a case manager). We’re not trying to be rude or mean if we hold our ground on session times or availability. We’re trying to make sure we can continue to be the best that we can be for all of our clients, including you.
  • Workers, think outside the box. Not just with your clients, but also in regards to your job/position in an organization/your own practice. What are your strengths? How can you use them for the betterment of your organization/practice? Are you doing things that others are not? If others are doing it, do you have a unique spin or voice to bring to the table? Is there something you see in your client that others don’t?
  • This one goes to everyone: have fun. I’m serious. I work mostly with kids, and I see so many instances of family and workers alike getting so wrapped up in the goals and the data that they forget that they are dealing with a kid. I celebrate when a client has a “kid moment.” In that moment, autism wasn’t some horrific veil hanging over their heads (according to everyone around them). Autism was a way to really feel the sunshine and the wind, to appreciate every color dancing across a bubble. Autism led to a laughing fit to end all laughing fits. I’m not trying to downplay the challenges of this type of neurodiversity. It is a tough road to tread, nearly impossible at times. What I am saying is to really be in the present when it comes to those moments where the child is just being a child. I dare say that maybe, just maybe, you may want to join them there.

Passed Over, Brushed Aside

This article is why I do what I do. I have seen first hand how signs of autism that are clear as day to me and my client’s family are brushed aside by professionals. This seems to especially be the case with minority communities. I really want to change this. I want families to be educated and informed, but I also want that for the professionals that see and treat them. Sometimes you have to go beyond the diagnostic criteria and trust that maybe, just maybe, the family has an idea that warrants a closer look.

A family’s yearlong struggle finally results in son’s diagnosis of autism

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.