Autistic Activist Interview: Whitney Hodgins

 

It’s that time of year, Autism Awareness Month. Where parents and service providers raise autistic voices in developing self autonomy over their own bodies and experiences and obviously not keeping autistics silent and making money for themselves/developing their own careers. So I thought I’d interview an amazing autistic activist.

Meet Whitney Hodgins, a full time university student taking a double major in anthropology and history at Brandon University.  Whitney uses she/her pronouns.

[Image provided by Whitney Hodgins

Description: a young, white woman is smiling at the camera on a black background. Her dark hair is pulled back likely in a ponytail with some cascading onto her shoulder. She’s wearing square-ish glasses framing blue/gray eyes. She may be wearing a nude lipstick. She’s wearing a crimson dress shirt with what looks like a shiny leaf decal. A chain is visible on her neck and a low-cut shirt is visible at the V where her dress shirt buttons up.]

Note: this is a long interview. Very informative and I really enjoyed chatting with Whitney again, but autistics can get pretty chatty when we get on our specializations. Browse the questions that interest you. We cover a lot of interesting and important topics!

So let us about yourself. Who are you and how did you come into your autism?

What can I say about myself; I come from a small place called the Turtle Mountains, it is an eroded mountain in Manitoba that straddles itself between the Canadian and United States border. We locals call it “No Man’s Land” because for the longest time you did not get cellular service or internet out there.

My diagnosis story is not what I would say to be the more common story like today where children are diagnosed around the age of three. I was diagnosed when I was around 14 years of age. Growing up I knew I was always different from the other kids in school I just did not have a name for it until I was a teenager. Being diagnosed as a teenager had its own sets of challenges because as a teenager you do not qualify for a lot of the “therapy” at’s out there right now because they like to have children before the ages of 12 in those therapy programs in order for the client to reap the full benefit of such programs and they are designed for children. So my family and I really had to think outside of the box when it came to dealing with my sensory issues and dealing with what autism was. I was also diagnosed prior to DSM 5. So I was diagnosed formally as Asperger’s Syndrome, however I simply use autistic as my title now as most people do not know what Asperger’s is unless they themselves have it or know about the spectrum.

At the age of 16 I started being an autism activist, something that I didn’t know that was what I was doing, but it’s now I realize that’s exactly what I was doing. It started out basically talking to my high-school teachers about autism in order to help them understand me in order to help me with my problems and offer assistance. I presented them with a tool kit of ideas in turn which got used by teachers for other people on the spectrum in the school (we surprisingly had a large number of people on the spectrum there). This is where I found my first bit of success. Since then it’s been all
uphill from there.

 

In your role as an autistic service provider, what do you do?

So my role as a service provider is a tad bit different then what people expect. I am currently the Accessibilities Director at the Brandon University Students’ Union, this will be my third year as an advocate on campus. My responsibilities here according to the bylaws are to assist my executive where they need help, so this can be for things we put on like orientation events or sitting on boards.

My other responsibility on this board is to the students with accessibility needs, so it is not just autism specifically but anyone who views themselves as having a need that is causing undue hardship from their ability to learn and succeed in post-secondary education. I can direct them to resources on campus or in the community. I have in the
past also just sat and listened to them talk about their problems, because sometimes they just need someone to vent to and with our long wait times for counselors it can sometimes not wait, so they come to me. Other times I am sitting with them as an emotional support person while they talk to Deans on issues with professors or needing to talk to BUSU executives or need help getting to a counselor and need someone to take that first step with them. These are the things I do for my first job.

My second job is I am currently the Accessibility Commissioner at the Canadian Federation of Students Manitoba. This is a lobby group that lobbies for student union interests at the provincial government level. So my role on this board in the last year has been to meet with Accessibility Directors at student unions across the province and to assist them any way I can. Again that could be providing emotional support, or providing information on events and helping them with anything they need. Or my more favorite pass time rallying to provincial legislature and speaking in standing committees
against regressive policies that would add onto the forever amounting costs to students with accessibility needs in the post-secondary realm. When I am not doing those two major things, I’m being called away to speak at conferences and workshops talking about autism and my experiences. These talks have me speaking on university campuses, hotels, resource centers and I have even been added to a bureau of speakers that the government can now call upon where they know they can use me as a consultant for future projects or events. This to me is huge because now my foot is in the door and could one day help more people on a larger scale.

Other things I do but these are extremely rare circumstances, is I mentor youth who are in trouble. Not like criminal trouble, but those having trouble making the next step in their life. Because more often times than not people on the spectrum in Manitoba fall through the cracks and face a higher rate of mental health issues as a result of there being no transitional program from leaving high-school to entering adulthood and the workforce. And once someone turns 18, all those services that our parents and caregivers fought to get us now are gone and we are back at square one. So by the time they get to me they are in rough shape, they think there is no way out of poverty, they don’t know what to do, and so I basically act as not just a role model but I also act as a rock for them to bounce ideas and questions off of. I also have had the opportunities to work with much younger individuals on the spectrum but I am mainly getting in touch with high school graduates. And that’s what I like most, is being able to offer a safe space for people to air out their troubles and concerns or simply to be themselves. That to me is more rewarding then any gold medal or any pat on the back.

 

When you go out into and support families on the front line, are you paid to do this work and compensated for the travel costs?

 Do I get paid to help people on the spectrum on the front lines? No. I don’t. And I don’t ask for money to do it either because parents are already stretched with costs for things like therapy or assistive devices that I would rather not burden them by expecting a fee. The only time I get compensation for anything is when I go do my talks at conferences or events. And even then I say it’s an honorarium and make it up to the choice of the event organizers because sometimes I’m speaking at organizations  that don’t have  an exorbitant amount  of money. Usually at most I ask to have transportation covered. Everything else is free. Sure it’s not a business on my end but I find that this has what made me well sought after. Because I’m not going to charge people an arm and a leg for services. Has the thought of making it a business crossed my mind? Yes. Because it’s getting to be such a frequent thing now that it might as well be. But that leaves alot of questions to be answered and leaves alot of things that need to be smoothed out first that I’m in no position currently to work out. I’m still in school so things will need to wait until I graduate.

What’s the state of autism services in Manitoba?

So the things I do can either be a very small thing or a very big contribution depending whose looking at the situation. But one thing I will never know with the work I do is who it impacts and whether or not it was positive or negative. In the work I do I will never know. So as you can see based on my small 1500 word essay is that the state of services in Manitoba for people on the spectrum suck! We don’t have “autism specialists”, –sorry
one in the entire province who I’ve never met. We have little to no resources out in the rural communities and as a result I’ve seen autistic children removed from their families and placed in foster care so that they can “get resources”. Like mentioned earlier there are no transitional programs for high-school students entering the workforce. If I had to give them a letter grade it would be F because if things were reliable and things were all
pancakes with maple syrup I would not be doing this much work.

 

You mentioned that there’s one autism service provider. Do you dislike this person?  What is it that they do that’s so horrible? 

I do say there is one service provider that claims to be an “autism specialist” in my area and that’s because they went to school to be able to diagnose people.  I find to the claim of “autism specialist” to be an incorrect term used and is becoming a “buzzword”. Because when you think about it, who knows what being on the spectrum is like? The answer is those living on the spectrum every day. We don’t just get to go home and punch out at the end of the day like a specialist does. We don’t get paid to have the knowledge we do have. Autism doesn’t work like that. We are living and breathing it every minute of every single day. That to me is an autism specialist. I have never met this person because they live in a city 3 hours away from me. Do I dislike them, I can’t say that because I’ve never observed their practice yet. But what I don’t like is when service providers claim to be autism specialists when really they’re not. You can’t know the entire spectrum and how to diagnose it. You can’t know everything about one condition without some ableism being constructed in that practice. Because most medical journals abd practices view us as abnormal people who deviate from the norm. When in fact normal is a myth. That’s what bugs me most.

For a take away for the parents who may be reading this, what do you do to support or autistic children?

For parents my biggest advice to you is to sit down and talk with an autistic adult, we know what your child is going through because we have already been there wrote the storybook on it. So rather than walk around saying you don’t know what you’re doing, go to the source of information and don’t dart around in the dark, trust me all your questions will be answered and save you loads of time. Another thing I find that is very
important is being an ally does not mean “speaking for us”, rather it means “standing with us and letting us speak” about issues that concern us the most. So don’t be that parent that silences us with your voice, rather use your voice to be a good ally.

 

What methods/therapies do work with autistics?

One thing I do with parents and their children or adults on the spectrum and caregivers is if their old enough I try and do the hand grab technique. This is a non-drug, non-therapy thing I do and it basically is if your feeling a meltdown in public coming on. Rather then run away (some people run and hide in what looks like a safe space and that’s what I used to do) now if you feel the meltdown happening you go up to the person accompanying you who knows the plan and the trick is to grab their hand and squeeze it three times. This to them an indicator silently saying get me out I need space. The person will then stop and  look around and in a matter of less then 5 minutes you should be outside. This strategy has worked successfully for me and my partner for years and because of it I’ve been able to go to packed stadiums and comicons and anything else that sounds like an autistic hell. It has allowed us as a couple to go to places we both enjoy and it allows parents and their children to do the same thing. Or other people on the spectrum and whoever their with at the time. Have I gotten feedback to people I’ve suggested it too? No. So either it does work or it doesn’t.

I try and do things drug-free simply because as a person who was put on drugs as early as 7 years old. I know that drugs are only temporary. Or as I like to call them, “invisible bandaids”. Drugs ultimately don’t help people with autism. Its rather a temporary coping mechanism until you figure out your own ways to cope. And they are really only designed for your comorbidities, not autism. At least that’s the original intent of medications. As a child taking drugs. Going back I really shouldn’t have been on them at such a young age, because most drugs I was taking were meant for adult consumption only. But when kids don’t have drugs made for them then small doses of adult drugs are used.

But that didn’t mean I was safe. We were constantly checking my liver to ensure it was still functioning. My blood pressure would drop to the point I had hypotension and still do. And I suffered extreme withdrawals from the medications when I was taken off of them because they had the negative side effects. These withdrawals were so bad it was at the point where I was crawled up in a ball in the dark and so much as a pin dropping was an amplified hell that made me scream in agony.

So one of my goals is to not involve drugs with young kids. There are other ways to handling situations, but I think that comes with education, training of both medical staff and parents and making sure that this is more of an aim at acceptance rather then changing someone for who they are.

Does this mean be completely away from drugs? No. If the symptoms are so severe that you tried everything else you can think of then yes by all means do medical intervention. But I feel like some medical professionals are too trigger happy when it comes to medical intervention when really we need to be taught coping skills and healthy ways of self-care. Pills aren’t a coping skill. They are a coping mechanism to buy someone time to find a healthy coping skill.

Do you have any ideas for therapies that might be useful for autistics since the services that we are criticizing don’t work?

Therapies that I have seen work are auditory therapy mostly. I use it and it works for me. So basically auditory therapy is 30 minute sessions of sound that blocks out everything else. I’ve seen people recommend ambient sounds but to me I use my favorite songs. And I block out external stimuli with it. So to the people who don’t know what that looks like, it looks like I’m walking down the street with a pair of ear phones in. Nothing that stands out. But I’m actually blocking out traffic, people talking around me, you name it.

As for other therapies I’ve never been exposed to them but I know of court cases where places have been sued for abusing therapies. One such case was the Judge Rottenburg Centre shocking a teenager 32 times over the course of 7 hours because that person refused to remove their coat. That was electric shock treatment where if someone does the wrong thing you shock them until they do the behaviour your looking for. Medically it’s called Aversive Therapy. And most countries ban it from happening now.

In an ideal world, what kind of services would you like to see offered to autistic children and to autistic adults?

So now things are going to get repetitive here and for that I apologize. Things I want to see offered in terms of services for both autistic children and adults is firstly, a transitional program. For the love of tea and crackers we have known about autism for how long and we still haven’t done this? It’s 2018 I think it is time to do that at least.

Secondly, having programs available for all ages of an autistic person’s life. Giving services to one part of their life than none the next is setting one up for failure.

Thirdly, getting rid of therapies that have been proven not to work for people on the
spectrum.

Fourthly, getting rid of organizations that claim to be all for autistic people but never consult with autistic people *cough cough A$ cough cough*.

Fifthly, no more autism awareness month, we are far past the awareness stage, instead we need acceptance and in order to do that we need to ditch awareness month.

Sixthly, we need to stop having yearly “prove your disabled” forms hitting our laps every year. I feel like it is not only a waste of my time, every parents’ time but also the physician who has to fill out that paper work’s time just to get things like a Disability Tax Credit. If I’m like this since birth, chances are it is not going away anytime soon.

Seventh, we need to provide more post-secondary funding opportunities for people on the spectrum. Nope correction ANYONE WITH A DISABILITY. Because currently there aren’t any scholarships specifically for people with needs. The only ones I have seen are for those studying disability, what about the people living with disabilities? Where’s our piece of the pie? And finally we need to stop being ableist to people with various capabilities. High functioning people (wince here) are viewed to need no help what so ever, making it harder to get services, and lower functioning individuals get all the services because people underestimate their capabilities and sometimes their intellect. Why not just let us prove to you what we are capable of and leave your assumptions at home? Simple. Very simple.

 

Do you have any comments for the government who funds autism services?

To the government who funds autism services, if the organization does not consult with autistic individuals, they should not be funded because how will they know how to help their clientele if they do not ever consult with them? Consultation is key for any organization because it helps direct and guide that company in the direction it needs to go based on its memberships and clients. This direction will change over time as a result of that and meet the standards demanded by them by their membership. Again, something that could be very easily done and it is not done.