Autism Interview #160, Part Two: Marcelle Ciampi on Learning About and Advocating for Neurodiversity

Image source: The Art of Autism

Marcelle Ciampi M.Ed. (aka Samantha Craft) is an author/advocate best known for her book Everyday Aspergers. She serves as the Ambassador and Senior Manager of Diversity, Equity, and Inclusion at Ultranauts Inc., an engineering firm with a neurodiversity-hiring initiative, where Ciampi is credited for developing an innovative universal design approach for inclusion. She also provides keynotes, workshops, corporate training, consulting, and life coaching for Spectrum Suite. In Part One of her interview, Ciampi discussed how Ultranauts is serving as a model of workplace inclusion and offers advice for advocating for inclusion in the educational setting as well. In Part Two, Ciampi shared a defense of the neurodiversity paradigm as well as resources for families interested in learning more.        

Parents or therapists sometimes will say that neurodiversity as a paradigm (or the idea of autism acceptance) can be problematic because it doesn’t really work for everybody on the spectrum, especially those with high support needs. I’ve even heard people say that advocacy for neurodiversity is gaining so much attention that it might become a distraction from efforts aimed at gaining government funding or resources for the people who “really need it” (those with higher support needs).

If anything, we need to look at the DSM-5 and their responsibility in changing the diagnoses of autism, and the impact of how they changed that language. I don’t think that we should blame a cultural movement. The neurodiversity movement is based on people’s right to equity and equality, and to be recognized as individuals and not abnormal, and given our seat at the table. I don’t think we should blame people for uprising to be heard rather than shamed, ostracized, isolated, and shunned. I think we need to look at the DSM-5 and how that has created a very wide umbrella for all different types of brain variances, whether that’s good or bad. This determination is up to each individual to decide, and that’s based on their own cultural indoctrination, their personal preferences, their history, and how much they’re struggling with themselves or their child, or loved one.

What we’re looking at is so much bigger than “don’t say that,” or “don’t do that.” What we’re looking at is, is autism a disorder, a condition, an identity, or a culture? And what I advocate for is moving from a deficit medical lens to a cultural lens, because until we move toward a cultural lens, we’re going to see autistic people as abnormal and less than, and they will not have rights. They will be othered; they will be segregated once you see autism and being autistic as an identity–no matter support needs, they can be extremely high or extremely low.

Then we grant a people, a historically marginalized people–who have been institutionalized and abused and victim to bullies and predators–a platform, and we grant them rights to equality. The result is autistic people being siphoned into hiring practices in one separate building through one separate program–that’s segregation, and it can be grounds for litigation for any other race, for any other “minority.”

It’s society’s responsibility to change this, and this is what my new manuscript is about. It’s society’s responsibility to change the lens of autism. Most autistic people who have high support needs have these needs for co-existing conditions. It’s for epilepsy, mutism, mental health conditions, PTSD, sensory integration disorders, dyslexia, etc. We could address all of those co-existing conditions, just like we would for any other typical human being.

So when you call that all “autism,” it becomes problematic.

Yes. We lump it all together, and we don’t separate autism by demographics, by gender identity, by socioeconomics–we use no other factors. They lump people into an autistic study–if you’re autistic, then there’s nothing else that’s recorded or studied. There’s no other differences. There’s no variances, there’s no complexities. I’ve written about this–we’re missing out on all the factors that not only make a human being unique and distinguishable and different, but things that affect how we approach support needs. In summary, we need to create safe space for mature and comfortable conversations and start working toward unity and not separating and segregating a culture of people that are already segregated and separated.

As a mother of an autistic son, it was the hardest experience in my life. I used to cry in the hallway, holding his door shut because I didn’t want to lock him in his room, terrified for me and my other son, as he threw everything off the walls and hit people and choked people and smothered people and hit himself and harmed himself. I know how extremely hard it is to raise a child who has high support needs. I had behavioral specialists and psychologists coming to our house and leaving with their hands up in the air, saying, “I’m sorry, I cannot help you. We don’t know what to do.” I know what it’s like. So I’m speaking from the perspective of a mother who’s been through the long journey of nurturing, fostering, and loving a beautiful being who presents differently.

And I’m coming from a perspective of an adult on the spectrum and an advocate who’s known and spoken to over 10,000 people about these issues, with one-on-one meetings, through blogging, in emails, and different speaking appearances. I know what we’re looking at, and it’s not about creating more division. It’s about figuring out how we can meet in the same place and see that some of our struggles, some of our desires, and some of our wants are exactly the same. Just because one voice is loud, doesn’t mean they’re discounting the other voices. And just because someone wants their human rights, like the human right of liberty, doesn’t mean that they’re discounting parents’ struggles and heartache. There needs to be a bridge between the two for us to make real change. And I’m hoping that some of the works some of us are doing will create that opportunity for discussion and collaboration, because until that happens, we’re just going to continue fighting a fight that does no good for anyone.

What are some good resource portals for families interested in learning more about neurodiversity from self-advocates?

There’s also so many resources on social media now. When I first started out, I was one of the first people who created a Facebook group for older, diagnosed autistic people on Facebook. And when I first started out, there was hardly anything like it. That group I believe still exists. I ran it for a year, and then I gave it to the competent hands of five other people who identified with having Aspergers at the time. It’s a secret group and has been going on for quite a while. But looking in autism groups on Facebook is a really good way to ask around.

My personal Facebook page is Samantha Craft, and there’s over 3,000 people there. Most of them are on the autism spectrum as well, and I call it a safe place for autistic people. I don’t condone any infighting or shaming. One of the things that I’m going to be talking about in my upcoming book [working title of Autism in a Briefcase: Straight Talk About Belonging in a Neurodiverse World] is something I’ve coined “core seeing,” and I’ve used this practice for the past six years. This is what I’ve been practicing as a prominent advocate and leader in the autism community. I didn’t set out to be that way, but that’s what it organically became. I found that with the autism community there can be a lot of debate, conflict, and bluntness, because of our psychological makeup, our history of trauma, sometimes our mood disorders, if you will, and our natural pattern-seeking ability and ability to find discrepancies and point out areas that perhaps need to be looked at further.

What I learned after I had been in the public eye for a couple of years on social media is that I needed to find a way to not take things personally so that I could be the best advocate and supporter. The practice that I do is to go inside and sit with myself. I use discernment, and I process those emotions and how I feel after someone has said something. And then when I’m ready, I come back and then use that to do better in the world and focus my time on positive and beneficial things in the world. I’ve learned not to be reactionary, to not take things personally, and to see things as neutral, whether it’s a comment that someone else might deem as mean, or bad, or critical, or I might deem as great or wonderful.

It’s pulling from my Buddhist practices to see these interactions as very neutral, and neither one is good or bad. That has helped me tremendously with being a human being, but also in my advocacy work. And as a result of that, which is very significant, is the creation of two autism-related blogs. They both have over a million views, and I also have corresponded with thousands of people around the world on social media. In my eight years, I’ve only had five incidents, (not even a significant number) that I would say were unkind in a way that crossed a line. And it’s possible–I’m making an assumption here–but it’s possible these commenters had some coexisting conditions or mood disorders which allowed for that negativity, and I would be understanding of that.

My point is, in advocacy work, it’s the responsibility of those role models and leaders to emanate what it means to be a quality leader and what it means to hold safe space for people. My Facebook page is a very safe space. I also have my Everyday Asperger page, which is more open to the general public. I’ve had people through the years say, “How do you manage a page and not have conflict and not have infighting?” It’s because I don’t buy into it. I don’t let it feed me. If people want to vent, they vent and practice certain phrases. Like, “That’s an interesting point of view. I’ll have to think about that.” Just having phrases like that in your reservoir is helpful.

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