Illustration by Rebecca Burgess
Emma Dalmayne heads up the not-for-profit organization Autistic Inclusive Meets where she uses her experience raising her five autistic kids and her own knowledge of being autistic to create a community where autistic people feel supported. There, she promotes the acceptance of autism and helps autistic people socialize in an inclusive environment.
In addition, she has worked tirelessly against dangerous “treatments” and “cures” that are being promoted to parents of autistic kids to help rid their children of autistic traits. Those who make these harmful products are exploiting autistic people and their families by preying on parents who feel desperate for answers for how to help their children.
Emma has taken on both the anti-vaxers and those selling or promoting products like MMS (Miracle Mineral Solution) to try to educate people about their dangers, promote education about autistic people, and involve the authorities when she sees children and vulnerable adults in danger. MMS is being sold as a “supplement” online to parents as a way to “cure” their autistic children of their “symptoms,” but a major ingredient is a harmful industrial bleach that can be incredibly dangerous or fatal.
Since first learning of these fake and dangerous “cures” in 2014, Emma has worked to uncover websites selling these types of products. She infiltrates Facebook groups whose members promote them and talk about their experiences administering MMS doses to their children; Emma then passes on information to the police and social services. She’s also fighting to make the UK government pass legislation that will ban the marketing of such products to the public.
Emma extends her efforts to fight against pseudoscience in general, including when President Trump suggested using cleaners as a possible treatment for COVID-19, co-writing an important article published in The New York Times on the subject of “bleach cures” for everything from autism to cancer to COVID-19.
Emma has been campaigning for over five years, but these products still haven’t been banned in the U.S. or the UK, though in the U.S. the FDA has temporarily banned a church from selling MMS to treat COVID-19 because of false and misleading claims. From an FDA press release: “When combined with the included activator MMS has a chlorine dioxide content equivalent to industrial bleach.”
While working hard to uncover, expose, campaign, and fight against harmful treatments, Emma also fights against ableism and lack of appreciation for and understanding of neurodiversity in our society. She does all of this despite receiving threats of rape and other types of violence since joining UK health officials in promoting the MMR vaccine after a rise in Mumps cases—she also fights against the anti-vax movement, whose members often base their position on the completely discredited doctor, Andrew Wakefield. Emma says, “As an autistic woman and mother to autistic children, I saw a need to challenge the negative rhetoric and incorrect claims of Dr. Andrew Wakefield.”
Emma continues to receive threats on a regular basis from some people who promote MMS or are in the anti-vax community, but she takes this as an indication of just how important her advocacy work is:
“I’ve been campaigning for five years now, and I do get a lot of hate from people who use bleach on their children believing it can cure them of their neurological difference. And from people who are anti-vaccine who believe that vaccines cause autism and that we are a vaccine injury or some kind of fault or epidemic or holocaust. And it can be unpleasant.”
Emma has also received nasty phone calls, people have taken photos of her children, and someone even sent a tablet filled with distressing encrypted files to her house.
“It can be horrible. But the thing is I have to remember why I’m doing this. And the reason I’m doing this is for my children, my grandchildren, of which I have one. But there will be more. And for your children. For everybody’s children, actually, even the ones being abused with bleach. Mostly for them, because they need someone to stand up and say, ‘this is wrong’, and the more that they tell me I’m wrong for doing that, and the more they threaten me, it only makes me more determined and more stubborn to carry on doing it. Yeah, threats don’t work.”
Beyond the danger, parents using these types of treatments are sending clear signals to their autistic children that there is something wrong with them, rather than providing to their kids the important message that they happen to have a neurological difference with which they can still thrive, if they receive acceptance and understanding.
What does a typical day look like for you?
Right now, everything is up in the air due to the lockdown. Normally every Monday and Thursday, I am out with the kids running the AIM (Autistic Inclusive Meets) social and sensory groups. On Saturdays we would have AIM football. The rest of the week is spent chilling out, following the children’s interests, and outings. Now we are in as I am shielding, so the children are enjoying computer games, movies, painting, and their new trampoline.
What hobbies or interests do you have outside of your work and home educating?
I love to write. I have written two books and I have a blog. I co-own a group on Facebook as well: Autism Inclusivity. I love to spend time snuggled with the kids watching movies, playing with our two puppies, and reading.
How does being autistic help or hinder your work or hobbies?
It helps me hyper focus. If I am giving something attention, trust me, it gets my ALL!
What kinds of changes or accommodations do you make in your life to allow you to be successful?
I usually accidentally don’t. I campaign against autistic abuse and end up burnt out. A lot of what I see in my work is very distressing. When I do remember, I give myself breaks, watch a silly film, or cook. I love to cook!
Have you experienced discrimination or bullying because of your autism or autistic traits?
I was once told upon telling an attendee at one of our groups that I am autistic, “Wow and you did all this? Well done, you…”
I was bullied dreadfully as a teen and realize now it’s because I just didn’t fit in, and when I tried, it didn’t work.
What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?
Be you. There’s only one of you. Seek out other autistic peers and know that you are not faulty or disordered. The world is.
What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What has helped you with your own kids? What advice from the “experts” do you think parents should ignore?
Accept. Don’t externalize your child’s autism and look on it as an enemy to be beaten. Your child is wholly autistic so embrace, enable, and support.
Don’t take on your child’s identity. You are the parent of an autistic child, not an “autism mom/dad.” That’s identity appropriating.
What was one piece of advice you received that helped you be comfortable with who you are?
“Emma, not everyone is going to do what you do and react how you would.”
How has being autistic helped you relate to and connect with your autistic children?
I realize when they are overwhelmed and can redirect to sensory stimuli or to a dark room to regulate. I know how they feel just by looking at them.
How has it helped you educate them at home?
We unschool; my children are not the sit down at a desk and learn type. Both are very active, they love to explore, to run and climb. They love documentaries and conspiracy theories, deciding things after researching themselves. They learn at a different rate compared with others their age in mainstream, so we take things slow and follow their interests. Museum trips, nature rambles, and art. Social groups and just having the time to not rush makes such a difference.
What’s a big myth about autism that you work hard to dispel or fight against?
- That autism is an injury or a disease. That it can be cured or purged.
- Or beaten out of a child.
- That bleach or turpentine can cure autism.
- That we are an epidemic or a holocaust.
What are the best ways for people to connect with you?
- Organization is www.autisticinclusivemeets.org.
- My books are on www.stasspublications.co.uk.
- Twitter: https://twitter.com/EDalmayne
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