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, June 4, 2019

“To Thine Own Self Be True” – Pride Month, Supergirl, Transgender Representation, and Neurodiversity Pride (Oh My!)


Hey all you out there in internet land! As you’re no doubt aware, June is Gay Pride Month, and as such, yours truly wanted to share something that really inspired me in pop culture recently – a certain...er...super powerful moment that occurred on the CW’s hit series ‘Supergirl.’ The adventures of Kara Danvers have been excellent all year, with a story focussing on bigotry and institutionalized oppression at a time when such a message desperately needs to be heard. Of particular note, however, is one of the new characters they brought in – a spunky heroine who goes by ‘Dreamer.’ Born with the given name Nia Nal, Dreamer is a superhero whose power is derived from being able to use dreams to predict future events and gain insights, among other abilities. She is strong, kind, compassionate, caring, and also perhaps most importantly, different. You see, in addition to being half-human and half-alien at a time in the series where anti-alien prejudice is in full swing, Nia is also transgender, and both admits to having struggled because of it, and to it being a source of pride and strength for her. Indeed, she is informed by it, shaped by its challenges and gifts in equal measure, and also more than the circumstances of her birth (Mewtwo from Pokemon would be proud).

Needless to say, as someone with similar experiences (albeit as a spectrum dweller rather than a member of the trans community)? I was extremely inspired. Especially after she delivered a rousing and passionate speech defending differences between people and encouraging everyone to speak their truths. I’ve reprinted it below:

“My parents believed that humans and aliens could co-exist. And I'm living proof of that. But growing up wasn't easy. I am also a trans woman. I'm different, Miss Danvers, but so is everybody. And I don't know when that became such a bad thing. The greatest gift we can give each other is our authentic selves and sharing that. Sharing our truth is what will make us strong. So, here I am. I am both human and alien. And I am a trans woman. S'mores are my favorite dessert. But I will always choose salty over sweet. I broke my nose when I was 15 during a game of kickball. My mother was my heart. And since I lost her, it's felt like a piece of me is missing. But my father is my spine. I'm a Gryffindor. Uh, my Patronus is a Dapple Grey Stallion. I am an INFP. House Stark. I love Thursdays and April. And nerdy boys who think too much. And I am proud of all that I am.”

This moved me in a way I can’t even describe. All of us who are different have at one time or another experienced exactly what Dreamer described, and so I’ve decided to take her up on her challenge and speak my own truth through an adaptation of her speech for my own lived reality. Because speaking our truths is important:

I'm a child of a divorced home. I've struggled with that in one form or another my whole life. I've felt pangs of anger at my parents, resented things not going as they were 'supposed to', and sensed the awkwardness as my step mom, mom, and dad sat around the same dinner table at events like my Confirmation (since my family is Catholic). I always felt as though I was being torn between two worlds...and you couldn't cut the tension with a knife! But growing up was difficult for me on an additional level too - I am also an Aspie. A person with Asperger's Disorder. A spectrum dweller. Autistic...with probable (though unofficial) ADHD. I'm different...but so is everybody. When did that become such a bad thing? After all, the greatest, most wonderful gift any of us can give each other is that of our true, authentic selves. Our truths - unfiltered, unsanitized, uncompromising. So here I am - a kid from a divorced family, an Aspie, an ADD-er. Human. Pizza is one of my favourite foods. I love science fiction in general and Star Trek in particular. I'm an all around nerd and an introvert, but I love being around my chosen friend family...if only for defined periods. When I was 14, I almost got suspended from school for standing up for myself against my bully, and later when I was in Grade 12, I led our school newspaper on strike for freedom of the press after we got censored by the principal. My Nona Olga and Aunt Judy were two of the dearest women to me in life, and I strive to live according to the values of honesty, compassion, tolerance, and love that they taught me. I'm an optimist. A lover, not a fighter...though I can certainly be fierce and outspoken when I need to be. My step mom and birth mother are the ones who instilled in me that sense of resilience and courage though, and my gentle, wonderful father taught me how to be a good man. I'm a Gryffindor at heart, and if I were to be any animal, it would be a Golden Retriever, because while I love cats, I identify with dogs. I am an INFP. Vulcan follower of the V'Tosh Katur path. Jedi Knight. I live for lazy rainy Saturday mornings, and I'm a big fan of nerdy girls with glasses. And most importantly? I am proud of all that I am. I wouldn't be me without any of it.

We all need to speak our truths and be true to them. Otherwise, the world will never change for the better.

Thank you, Dreamer, for inspiring me to continue speaking mine.

Happy Pride everyone!

Yours in diversity,

Adam Michael