Showing posts with label ABA. Show all posts
Showing posts with label ABA. Show all posts

Saturday, January 30, 2021

I'm back! Reflections on Change and Growth

 Wow! Has it really been two years since I last updated this blog?? Bad Adam! *Smacks himself with a rolled up newspaper*

...erm... right.

All joking aside, between focusing more on the Differently Wired Facebook page, starting a YouTube channel, working on a major upcoming writing project of mine, and just...well...2020 in general *shudders* it occurred to me that I kinda let this blog fall by the wayside. Because of that, I wanted to take this opportunity to renew, revisit, and bring it back! After all, a neurodiversity activist like myself needs a place to ramble, rave, and rant politically, doesn't he?

Psst - the answer is yes!

The truth is, alot has changed for me in the two years since I posted my last article about alternatives to ABA. I've grown as an activist, changed my stances on some things, met some amazing fellow neurodivergent folks, and just really come into my own in a way I didn't think possible before. It's led me to want to write this post as much to reactivate the blog as to both clarify and share these new developments with you. But what are these changes and growth points, you may ask? 

First of all - the biggie. I've decided to stop referring to myself as an Aspie. This is something that had already begun even back in 2019, but if anything it's just accelerated since. Truthfully, I never used the term out of any belief in supremacy, nor did I ever think Hans Asperger was some kind of saviour (I have some deep DEEP concerns about the man but that's a rant for another day) - for me, it was always just a personal thing. It took me almost 15 years to even begin to accept the label Asperger's for myself because of lots of internalized ableism, so I wasn't quite ready to give it up just yet. It felt like something I'd fought hard and earned about my identity, so while I understood it wasn't any different than autism, I used it to honour that struggle towards self acceptance. Writing this blog and my adventures in Neurodiversity were actually a BIG reason why I was even able to do that to begin with, and now this feels like the next logical step. I will still refer to Asperger's in a historical context when discussing my own life and history, but I think it's important for us to move forward as the AUTISTIC community, and as a person who runs an online platform (even if it is tiny)? I can't help but be reminded of the words of Ben Parker from Spider-Man: "With great power comes great responsibility." I want to be inclusive towards our entire community, so this is a small but personally significant way I'm choosing to do that.

Next, I wanted to offer a clarification on two of my previous blog posts - the ABA ones specifically. I do think my overall message was pretty clear, but looking back I can see some people thinking I was a little soft and wishy washy at points. They were written for parent readers primarily, so I would just like to reiterate something for everyone, be you parent or fellow neurodivergent folks:

ABA is bad. Behaviourism...especially with no regard for the person's mental state, agency, or consent...is the baddest of bad news bears. Any suggestions I offered to mitigate being stuck with it, while valid, are just band aids. My ultimate goal is to reform and declaw ABA to the point of nonexistence. To kill it by educating, informing, offering mitigating strategies to those stuck with it, and hopefully causing people to change their minds about the whole thing in the process. Please don't interpret my approach as a validation of it. It's the farthest thing from! I just know what a big battle we have ahead on bringing true meaningful change to the way our society provides support for autistics, and this is my small way to help with that. At the end of the day, I am trying to kill it with fire, I just favour a slow burn that promotes learning and alternatives alongside the blaze.

For my third and final point, I want to end off on a cool note - I've been gaining a far deeper understanding of gender and how it applies to myself over the last few years! I've come to realize that ethical nonmonogamy works best for my neurodivergent brain as a relationship style, and I've discovered that my experience of maleness is different from that of others. It's coloured inextricably by my being autistic, which led me to discover a great new term - autigender! It's been a wild ride and I will definitely talk more about all of that in a future post, but I just wanted to share that here!

I guess the ultimate point of this rambling and raving piece is that growth is a good thing and often happens without our being aware of it. It's okay to look back at past opinions and think "I don't believe that any more and here's why" or "I can see how I wasn't so clear, and I want to explain better." After all, changing your mind based on the presence of new data is the whole point of the scientific method to begin with, and the posts on this blog tell a story of one autistic dude's growth over almost a decade, so there are bound to be things that, looking back, are cringy. It's part of the journey.

And I'm grateful to all of you for making it with me! 

Yours in diversity,

Adam Michael

Thursday, June 20, 2019

“If Not ABA Then What?” – A Guide To Navigating Alternative Autism Treatment Options


(This will be part one of an ongoing series that I will update as I continue my research into this important topic)

So you’ve decided to heed the concerns of the Actually Autistic community and part ways with ABA. Perhaps you spoke to an adult friend or family member who is autistic and has formal or informal experience with it? Maybe you saw how your child’s therapist behaved and spoke and found yourself sickened as comparisons to canine behaviour training flooded your mind? Whatever the case may be, good on you! Welcome to the wider world! It can be scary to make that step – after all, ABA is considered the ‘gold standard’, and from the moment an ASD diagnosis is handed down, advocates for its success are right there to offset the scary fearmongering about how awful Autism is – a seeming light in the darkness, reassuring parents that their children will be okay if they act quickly and put them in intensive ABA treatments. It’s so deeply enshrined as part of Autism supports that are offered by many governments and organizations that often no one stops to question the quality of the support or if there are in fact other options. I have good news on that front – there are MOST DEFINITELY other options, though they aren’t usually as spoken about. Having seen the fierce debates that rage online about this topic, I decided to put together a very special installment of Differently Wired in order to outline a few for you here. Please note; this is a constantly evolving subject, and as such this won’t be comprehensive. I fully intend to follow up on this list with new discoveries in future blog posts. With that out of the way, let’s begin!

Occupational Therapy:
This is one that a lot of people aren’t even aware has applications when it comes to Autism, but it absolutely does. The goal of OT is to identify areas of a child’s life that cause them difficulty and to develop a plan that helps address each one in an ad-hoc individualized way. It can encompass many strategies (such as physical activities to assist with fine motor skill development, play to encourage communication, assistance with learning basic life skills such as brushing teeth, tools for coping with transitions, etc.), but is generally focussed on helping the child in question develop skills that work best for them. By taking such an approach, Occupational Therapy can greatly assist Autistic children to develop essential life skills while not focusing too greatly on conditioning and compliance…two areas that make ABA problematic.

Sensory Integration Therapy:
Sensory processing issues are among the most common ways that those of us on the spectrum are impacted by our ASD diagnoses. Simply put, the Autistic brain and nervous system interpret sensory input differently than those of our Neurotypical peers. Quite often, it feels as though our senses are either dialed up to 11, or else almost entirely muted (we in the community often refer to ourselves as either ‘HYPERsensitive’ or ‘HYPOsensitive’ in this way, and it can vary from stimuli to stimuli). Sensory Integration Therapy focuses again on alleviating one specific aspect of Autism that may be unpleasant instead of changing the entire person to fit a socially prescribed norm – in this case, by helping children adapt to and become okay with certain sensory input patterns. Sensory integration can include wearing a weighted vest (because weighted clothing and blankets tend to have a soothing effect on some Autistic people), slowly being introduced to a food whose smell or texture can be intensely off-putting in order to help a person adapt to it, or embracing stims like spinning or swinging. As with most things involving comfort zones, its important to always take the consent of the child going through this into account…so this one can be iffy. Still, as an alternative to ABA that focuses on assisting with specific areas of difficulty, it has definite merit.

Relationship Development Intervention (RDI):
A relative newcomer to the field of alternative Autism treatments, RDI focuses on encouraging the development of a supportive relationship between parents and children wherein parents and caregivers work in the role of facilitator to guide and assist their child’s development in various ways. This relationship is referred to as ‘guided participation’ and allows children to ask questions, seek guidance, and learn from their parents, while also allowing parents to teach kids strategies for dealing with their emotions, self-regulation, and other needed life skills. Because it functions as a partnership between parent and child, it results in more validation, self-empowerment, and self-love for the child involved. They feel self-actualized and take ownership over their own learning and development, which is crucial!

Speech Language Pathology:
Speech Language Pathology is another one of those ‘I had no idea that helps with Autism!’ entries on this list, and once again it definitely does have applications in the field of Autism support. SLP focuses on assisting Autistic individuals with some of the most common communication issues that come with the Autistic neurotype. Some specific areas where it can be helpful are: understanding body language, knowing how to match emotions with facial expressions, making clearer speech sounds, and being better able to understand conversational norms such as knowing when to speak and when not to, modulating tone of voice, and so on. All of us on the spectrum have some communication issues – I myself often slur or improperly pronounce words when I’m excited and passionate, and often find that I communicate far more effectively using the written word than verbally. SLP can help kids work on these deficits in order to better help them speak and learn. It is therefore invaluable in assisting many autistic people shine!

Honourable Mentions:

Sometimes you come across something that might help autistic kids and those with other Neurodivergences maximize their potential but that don’t necessarily take the form of traditional therapies. In this next section, I’ll be outlining a few of those, with one in particular being really cool and I’ve become a huge fan of it!

‘Mightier!’ Bioresponsive Feedback Games (by Neuromotion Labs):
This is one that a friend of mine recently turned me on to, and I couldn’t have been more impressed! While officially designed for kids with ADD and ADHD, many of us on the spectrum have similar emotional dysregulation issues and this is extremely helpful for those. Essentially, Mightier is an interactive game experience that uses a heart rate monitor to allow the child playing to control the game by regulating their stress levels. This teaches self-regulation and is bolstered by a program that involves partnership between parent and child to co-develop calming and emotional control techniques while also allowing the child to have and express agency and guide the process. As a child-centered approach with a video game basis, how could anyone NOT think this one is awesome?

Giant Steps!
This one is complicated for me in that, as an organization, Giant Steps DOES have an ABA therapist on staff, but after speaking with my cousin who is a graduate of the program, I’ve opted to include it here anyway because of all the other things he says the program gets right. Based out of Montreal, though with operations in Toronto and York Region as well, Giant Steps is a comprehensive, multi-disciplinary approach to Autism support that is focused on developing individualized therapy approaches for each child. It encompasses more or less every approach previously discussed in this blog post – OT, SLP, Sensory Integration Therapy and so on – and combines them in a unique, child-focused way. Unfortunately, as I mentioned they do employ ABA therapists among the specialists they keep on staff, however once again, from what my cousin has described of his own experiences, the presence of the other alternative treatments on this list and the unique curriculum developed by the program serves to mitigate the more deleterious issues with ABA in this exact case. I can’t verify this, as I have only one Actually Autistic voice to testify to the program’s success…and as always when ABA is involved caution should be warranted…but I’m including this one as an honourable mention because while more investigation is needed, I find it tentatively promising in its focus on the whole child.

So that’s about it for now, though as mentioned I do plan to update this going forward as new information is presented to me. If there’s one thing I think anyone reading this list should take away from it its this: alternative Autism support programs by and large target specific areas of actual need, rather than attempting to condition autistic behaviour out of a person. They take into account the mental state, struggles, challenges, and even skills of the autistic person in question while developing a therapy program that meets their individual needs, and in the most ideal cases, is child-guided. But what can you do if your child is already in ABA and would struggle with the transition to something else? What if you’re living in a jurisdiction where Autism funding is scarce enough for ABA, to say nothing about any other types of therapy that might be more ethical? Well in such cases and others, I would offer the same advice I have before: develop a rapport with your child’s therapist, be clear that they are to focus on life skills, not on curbing autistic traits and forcing eye contact, and insist that your child’s mental and physical well-being is always taken into account. Their ability to consent must always be respected and encouraged as well.

Finally, and most importantly, the biggest step you can take to mitigate any deleterious effects you child may experience from any therapy (because none is perfect, even if some are better than others) is this; treat your child like a complete human, not a burden. Value their opinions and their insights, teach them that Autism is their superpower not their curse, and meet them where they’re at, instead of trying to change them to be where everyone else is. They are who they are, and you are who you are. You’re partners on this journey, and neither of you will ever find a better guide to how the other’s mind works than each other.

So buckle up friends – you’re in for a wild and awesome ride down the Neurodiversity tunnel!

Yours in diversity,
Adam Michael



Links to websites used in the writing of this article in case you want to learn more:
https://www.autismspeaks.org/speech-therapy (I know...I know...Autism Speaks is gross…but this was a useful article at least…)






Sunday, March 17, 2019

Reflections on ABA


If you've been following this blog for a while, you know that I'm deeply skeptical of ABA therapy, attempts at curing Autism, and anything else that shames autistic people for being who we are and/or tries to change us. Far too often, autism therapies try to curb autistic behaviour, with functioning labels being used to describe the degree to which any given individual is able to pass as neurotypical. Granted, all of these things are typically done and used with the best of intentions - we all want what is best for kids on the spectrum after all - but the fact remains that they don't work the way many believe they do; they don't 'minimize' autism per se, they simply teach the child in question to build a mask they can use to interact with neurotypical society more easily.

But is ABA inherently bad?

The answer is... complicated. On the one hand, it absolutely is! Building a conditioned behavioural mask has the unintended side effect of instilling in an autistic individual that how they naturally are is wrong and broken. All of us on the spectrum have experienced this to some degree - even spectrum dwellers such as myself, who have been historically able to pass more easily as neurotypical. Growing up, I always felt that failure was not an option - I had to succeed like everyone else, because I didn't want anyone to know about my neurodivergence. I wanted to be looked at for my abilities, not because of a label I'd been assigned at age 9. It's led to my greatest source of anxiety - being judged through a preconception instead of for who I am. I never considered this before getting involved in the neurodiversity struggle, but this is most definitely masking. Other spectrum dwellers experience this far more intensely, to the point where masking (and its associated mental health issues) is THE most devastating side effect of Applied Behavioural Analysis. It's why most of us on the spectrum are fiercely opposed to ABA therapy and how it has negatively impacted Autistic individuals throughout history.

On the other hand, the core science ABA is based on - behaviourism - is a sound, proven way to condition behavioural changes in humans of any kind. It's been used for some time to curb deleterious habits such as smoking and drinking, and can be potentially very beneficial in effectively teaching life skills to any person, not just autistic individuals - provided it is properly applied. This last part is key - one of the biggest problems with ABA is the dark history of how it was discovered. Dr. Ole Ivar Lovaas, creator of ABA, is well known to have utilized electroshock torture and other painful methods to curb autistic behaviour, seeing himself as 'building a normal person' out of what he saw as the raw human material that was the autistic child. Ethics are therefore key, as is thoughtful consideration of the application of the core science behind ABA. Utilizing conditioning to teach a child how to brush their teeth step by step is perfectly acceptable, for example, provided only positive reinforcement is ever used (because negativity can be cruel). Utilizing conditioning to shame and teach an autistic person not to stim, or to make eye contact uncomfortably, on the other hand, is problematic. It attempts to fundamentally change who the autistic person is on a base level. By all means, teach your child not to stim in a dangerous or self-injurious way...but stimming in itself is natural for the Autistic brain. It’s an outlet for excess energy and helps us concentrate better. Instead of curbing the behaviour (which only has the effect of making us burn with an uncomfortable amount of internal energy), the focus should instead be on finding a safe outlet for the urge. I for one flap my foot or my toes rapidly!

The acceptability of ABA is, therefore, up for intense debate. As an adult on the spectrum, I will always oppose the dangers inherent in it, and seek to promote better, more humane treatments for autistic individuals. After all, making someone feel like they are broken and need to conform with neurotypical society in order to function is deeply problematic and I won't back down from that stance. In reality, however, ABA is often the only type of therapy being offered to those on the spectrum. Typically, it's either that, or nothing, which is in itself a problem. For those kids who do desperately need guidance and assistance in mastering critical life skills, it can be a game changer. Don't get me wrong - in an ideal world, I would prefer any kind of treatment instead of ABA. Given that it is often the only option available, however, the advice I would give parents is this - while it's true that not all ABA therapists are bad, it is IMPERATIVE that you do your homework, critically evaluate how your child's therapy is progressing, and ensure that every step of the way, your child is not being shamed for being autistic, nor is their autistic behaviour being conditioned away. Stay involved, build a rapport with your child's assigned therapist, and make sure everyone involved is acting in accordance with the principles of Neurodiversity: teach us life skills and how to be our best selves, but accept that our brains work differently...and that our normal may not necessarily be yours.

If we all just do that, and accept people for who they are rather than trying to make people who we want them to be, the world will be a far better place.

As always, yours in diversity,

Adam Michael