A three part series by Spectrum Women – Lisa Morgan, Maura Campbell, Jen Elcheson, Dena Gassner, Christine Jenkins, Terri Mayne, Liane Holliday Willey, and Yenn Purkis
Lisa Morgan writes:
April is upon us once again, with April 2nd being the day the world will “Light it up Blue”. People will be talking about autism awareness. The world seems to be aware of autism, but celebrating what the color blue stands for shows the world is not aware of autistic people. Autistic people are not in favor of “Lighting it up Blue” or anything that color stands for that day
A better idea is to talk about autism acceptance because that is what is needed now. Let’s go even further and suggest advocating, for autism acceptance alone has served its purpose. We do still need to keep people talking about autism acceptance of autistic people, but what is acceptance without action? A person can accept an invitation, but if they don’t go, the acceptance was in vain. So, yes, acceptance is needed and now action must be part of acceptance too.
Action is up next. It’s about being done talking and ready to start seeing results. Action will require cultural competency (the ability to interact effectively with people of different cultures), in this instance meaning both the autistic and neurotypical (NT) cultures.
The actions would include being accepted for who we are, celebrating our differences, enjoying the unique perspectives we bring to society, understanding our social needs – just like we have been accepting and understanding NT people all these years.
There would be no more trying to “fit in socially”, no more puzzle pieces, no more talk of ‘cures’, and no more trying to mold everyone into the same culture. Instead, there would be cultures living among each other, enjoying differences, exchanging ideas, valuing unique thought processes, understanding needs, working together, and bringing out the best in each other between the NT and autistic cultures.
The following excerpts written by Spectrum Women give examples of awareness, acceptance, and the resulting action…
Christine Jenkins – wrote from two points of view, professional and as an individual.
As a result of my local advocacy since 2010, and the interviews I did with Will Mandy for SWM, I was asked to join a Girls and Women Advisory Group. That resulted in an invitation to a new Ottawa adult autism hub (official name TBD.) One spin-off from that was a Women & Disabilities panel that I participated in at a university Social Work class (40 students who may someday counsel autistics.)
The professor bought two copies of our book on the spot and donated one to the Carleton University library (my alma mater). I hope many students read them.
On an individual level, I was recently able to influence a mom of an autistic daughter who was going to enter a marathon to raise money for A$, and send her names of other organizations to support instead.
I made a respectful suggestion in my email Just a Little Concerned (she announced the charity run on Facebook but I contacted her privately.)
‘“Here are some links to why adult autistics and parent advocates have concerns about Autism Speaks. Even though some of the leadership has changed, they haven’t changed their focus, which is research on the human genome and cure.”
“Thank you Christine—I wasn’t aware of this. I will look into sending my donations to a different organization.
Much appreciated, S”
Tiny Baby Steps [from the movie What About Bob?]
Author – Maura Campbell – wrote from an autistic mother’s point of view.
I was told nine years ago, in hushed tones and with a sympathetic hand placed on my shoulder, that my heartbreakingly beautiful son had ‘shown behaviours consistent with a diagnosis of Autistic Spectrum Disorder’.
I was terrified. I knew nothing.
I’ve learnt a huge amount since then and I am still learning. Often the main learning has come from other autistics but I have gained valuable insights from teachers and teaching aides, clinicians and other parents as well.
As my awareness of what it truly means to be autistic has grown, so too has my ability to figure out how best to meet my son’s complex needs and how to work collaboratively with others to make sure he is given every possible opportunity to realise his full potential.
Done wrong, awareness raising is at best tokenistic and ineffectual. Done right, it is empowering.
I’m still terrified, but for another reason now. Parenting an atypical child makes you see the world through different eyes. It can be harsh. You see prejudice and discrimination that you simply hadn’t noticed before. You see casual ableism and disrespectful attitudes and that it’s still considered socially acceptable to mock neurodivergence or use it as an insult.
There is much more work still to be done, however we choose to brand it.
Author – Yenn Purkis – wrote from an advocate’s point of view.
I do a lot of advocacy work with neurotypical parents of autistic kids. I had an experience recently where everything I said to a mum of an autistic daughter was met with resistance. Their entire focus was on negatives and deficits. I kept trying to engage them, talking about how it is better to see their child as different and as valid as everyone else then to single them out for criticism due to things that were just a different approach and not ‘wrong’ at all. It became a bit of a heated conversation and I worried that I had made things worse.
However, the next time I saw this mum she was very different in her approach. We had a great conversation. The things I said which had been difficult for her to hear seemed to have worked their way into her consciousness. Now whenever I see this person we have a chat about how her daughter is going. Her attitude is very different to when I first met her. Had we not had the initial conversation she might have continued focusing on only negatives around autism.
The awareness our discussion awoke in her through introducing a neurodiversity perspective led to her being more accepting and that has presumably impacted on her daughter. So, there was a good outcome borne out of a difficult discussion.
This is the first of a three part series on April Autism Awareness Month looking at awareness, acceptance and action, edited by Lisa Morgan.