Showing posts with label Autism Acceptance. Show all posts
Showing posts with label Autism Acceptance. Show all posts

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…)






Tuesday, April 2, 2019

I Suck As An Advocate


I suck as an advocate. I’m not always patient. I don’t always hold space in my heart for understanding and compassion. I don’t always follow my own advice, and practice what I preach. The truth is, sometimes I’m a hypocrite. Sometimes I get frustrated just as much by my own fellow spectrum dwellers as I do by all the anti-vaxxers and autism warrior moms out there. Sometimes, I’m even impatient with those who need my patience most; my family…several of whom are on the spectrum or otherwise equally as Neurodivergent as I am. I want so badly to help, to speak out, and to make the world a better place, that sometimes, I fail to live up to my own standards.

I’m sorry for that…I really, truly am.

I can’t promise I will never fail – to fail is human after all. What I can promise, however, is to always pick myself back up. I promise to always listen, to always try, and to always learn from my moments of failure. I promise to use them to inform my activism, and to let them show me the way towards being a better human. I promise that I DO in fact understand that each of our struggles are unique, and that I will always be here if you need someone to talk to or support you. I can’t promise I will be able to do so with money…but that’s millennial living for you.

Most importantly, I promise to never give up the fight. To never stop trying to be the best advocate I possibly can be, and to never allow the failure to win.

So yes, I suck as an advocate – but I will never stop learning how to be a better one.

Yours in Diversity,

Adam Michael

Wednesday, October 4, 2017

I Believe in 'Curing' Autism - A Slam Poem Against 'Cureism' By Yours Truly

As I was browsing one of the Neurodiversity pages I follow on Facebook recently, I stumbled across a post about the harm caused by promoting the disability and cure narrative about Autism. Naturally, I jumped in and commented in support, but a funny thing happened as I was writing my response; it started to sound like a slam poem! Realizing this, I decided to run with it. I mean, if other oppressed and marginalized groups can have their own slam poetry, I figured it was high time we did too! So without further ado, I present my poem - the purposely-titled 'I Believe in 'Curing' Autism! Read it and enjoy!

I Believe in 'Curing' Autism - By Adam Michael

I believe in 'curing' autism:
I believe in curing it through acceptance of Neurodiversity.
I believe in curing it by recognizing that there is no such thing as a 'normal' human brain.
I believe in curing it by stripping it of the stigma and the label 'disorder.'
I believe in curing it by helping Neurotypicals and Autistics better understand each other and their needs.
I believe in curing it by teaching kids and adults both that it is okay to be different.
I believe in curing it by healing the damage caused to many by a health care system that oppresses and tries to change people away from being who they are.
I believe in curing it by helping society see our gifts and unique abilities.
Most of all, I believe in curing us of the conformity and disease narrative that harms all of our attempts to simply be valued as people in this crazy world.

But tell me you believe in curing us of our very natures?

That we are broken somehow because we work and think differently? 
That we clearly don't understand the 'severity' of our own situations?
That our concerns clearly aren't valid, and that our anger is 'typical Aspergers/Autistic behaviour?'
That we are clearly in need of being talked down to and cared for because we are incapable of this ourselves?
That you'd like to see pre-natal screening for the fabled 'autism' gene so that we could spare future generations the existence of people like us?
That you'd rather your child get smallpox, measles or any number of vaccine-preventable diseases rather than be born with autism?
That you'd rather rewire you child's entire personality and way of being, and in so doing destroy and rebuild them, rather than live in a world where they have autism?

That is not okay.

If this is your concept of a cure? Then this is where our problems will begin.
For I am Aspie, I am proud, and on behalf of all my fellow spectrum dwellers, hear us ROAR!


As always, yours in diversity,

Adam Michael

Friday, February 10, 2017

Subjective Meanings of Aspergers: The Power of Self-Identification

I had a really interesting conversation with a friend recently about personality types, where throughout the course of it, I brought up how some of my character traits were significantly impacted by Aspergers. My friend, bless her soul, told me that Aspergers had nothing to do with it; that somehow, even without it, my core personality would still be intact. Aspergers, to my friend and countless others, was something separate from a person; a condition in need of dealing with rather than an integral part of who someone is. Long time readers will know where I stand on this particular question, but the whole thing did get me thinking; what exactly does the word Aspergers mean? Not in the sense of the clinical definition, but in a more subjective way. What does it, as a label, mean to those who have it, those who know of it, and those who study it?

First off, I should start with the elephant in the room - to those who study it, 'Aspergers' no longer exists. Starting with the release of the DSM-V in 2013, Aspergers was dropped as a diagnostic label, instead replaced with the wide-reaching category of 'Autism Spectrum Disorder.' While this represents a good move overall - recognizing Autism as a spectrum that impacts everyone differently is nothing but beneficial to all those living with the condition - it does bring up an interesting question; what about those of us who've lived with and identified as Aspergians since time immemorial? Are our experiences now illegitimate? The DSM would say no; in fact it goes to great lengths to tell us that anyone who previously had a diagnosis of Aspergers - whether historically or currently - should automatically be considered to have Autism Spectrum Disorder without significant language or cognitive delays. Even still, that feels like cold comfort for the fact that a personally significant label has had its legitimacy removed. It's not that I have anything against being referred to as Autistic, it just doesn't feel as comfortable for me to wear as a label as Aspergers does. Others are certainly free to disagree; its no different than preferring queer over gay, Indigenous over Aboriginal, and so on. People should be free to self identify with preferred terms, and I prefer Aspergers.

Aspergers also takes on a different meaning to members of mainstream society. For such people, it is often - as illustrated by the comments of both my friend and many others - considered to be something separate from a person. It's something to be grappled with, dueled with, and reckoned with daily. This isn't a surprising stand to take; after all, our model of medical science is inherently cure-based. We identify maladies, find solutions and eliminate the problem. This has worked wonders in the realm of physical health, but it falls short in certain areas of mental health. Aspergers (and by extension all Autism Spectrum Disorders, ADHD and some others) is after all a pervasive developmental condition, and this means it impacts every bit of who a person is. What I like, how I think, how I interact - all are affected by it and molded by it. When Aspergers is referred to as something separate from who a person is, it does an inherent disservice to the person themselves. It implies that we can cure Aspergers and find a complete person underneath, when in fact the reality would be more akin to gutting a person and rebuilding a more socially acceptable one.

If there's one thing I hope this blog post makes clear, it's how the term Aspergers can mean many things to many different people. For me, it represents a core characteristic; no more or less a part of me than my Italian heritage, brown hair, sexual orientation or anything else. It's not separate from my deep personal self but rather an integral part of it, with its tendrils in every aspect of who I am as a human. As much as we may all wish it wasn't so, labels are a key part of how we form our own identities, and this is why it is important to move away from our traditional view of mental health as a cure-based exercise. Diagnostic labels in psychology go far beyond being mere medical terms; they actually tend to become internalized as part of who a person is because they deal with such intimate and deep-seated aspects of a person's character. Therefore I'm going to go out on a limb and say that, while Aspergers may mean many things to many people, the most important opinions in this regard are those of Aspies themselves. We're the ones living with it and seeing the world through its lenses, so how we choose to self-identify should be the most important thing to consider. In light of this, I'm declaring that - DSM be damned - I will ALWAYS be an Aspie. I do not 'suffer' from it, I embrace it as part of me instead of something separate, and most importantly, I'm comfortable with it. Everyone's self-identifications should be accepted and respected equally as part of their journey - no exceptions.

I am an Aspie, and proud of it!

Yours in Diversity,

Adam Michael