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In memory of Feda Almaliti, one of the women who taught me how to be an autism advocate. Tragically, Feda and her autistic son, Muhammad (Mu), were lost in an accidental house fire on September 26, 2020. Her fierce, unapologetic advocacy- with a healthy dose of both sass and humor – will be sorely missed in the autism community.
Her legacy far outstrips her years on this planet – she was a co-founder of the Autism Health Insurance Project, a force behind California’s Senate Bill 946, which guaranteed insurance coverage for autism services, and leader with both the San Francisco Autism Society and the National Council on Severe Autism. In her wake, may there be a renewed fight for equity for our autistic sons and daughters, brothers and sisters – especially those who cannot speak for themselves.
How to be an Autism Advocate
Feda Almaliti was an optimist and a fighter. She saw a brighter future for our kids – and knew it would take fierce activism to make it a reality. She died as she lived- devoted to her son and his ability to function in this world as an individual severely affected by autism. To autism moms everywhere, she was a true inspiration.
In an effort to carry forward her legacy of both positivity and activism, here are some ways to unleash your inner autism advocate, and some ideas to support and honor her life’s work. Feda has left the autism community some big shoes to fill; it will take all of us doing our part to fill them.
So how to be an autism advocate? How do you channel your inner Feda? Here’s some ideas to get started:
Current health restrictions aside, take your autistic child anywhere and everywhere you want them to go. Don’t apologize for their behavior – or their presence – just go for it. Only through ongoing exposure to the many colors of autism will your community – and our society – truly begin to accept our children as important contributors to our neurodiverse society.
There are aspects of autism that may be masked, smoothed over. Mr. Diggy in the pool is almost indistinguishable from others his age. Some individuals can “pass” at school, managing school assignments with relative ease.
But there is also the other side of the coin- situations that highlight the challenges faced by an autistic person. Mr. Diggy cannot function in a typical general education (pre-Covid) classroom, he needs far more support. Others have low muscle tone and hardly sit straight, let alone run or swim smoothly.
Whatever location or situation is challenging for your child, don’t shy away from it if you and/or your child really want to be there.
Speak your truth
If your child has limited verbal capabilities, you might literally be their voice. If your child has other communication challenges, you might be their translator. Regardless, your voice carries weight.
Naoki Higoshida reminds us that being autistic is dramatically more difficult for that individual than for those supporting them. But he also is able to share the insights, the openness, the freeness of thought that comes from inside the world of autism.
When something is important to your or your child, speak up and speak out. As is the case with many invisible disabilities, you are likely to encounter people making assumptions about behaviors or interactions with your autistic loved one. If the assumptions are incorrect, be direct and correct them in the moment. (Feda-style f-bombs are purely optional!)
Fight the System
Feda did not take no for an answer – and neither should you. In 2009 she was part of a landmark class action suit that resulted in Kaiser Permanente covering treatment for autism. This laid the foundation for the passage of California State Senate Bill 946 in 2012, which directly affected our family’s access to services.
Though it can seem daunting, simply start with what’s in front of you – the doctor, the teacher, the therapist – and go from there. The power of a parent-advocate is greater than you might think and the providers on the ground will appreciate your support – they often feel as trapped by the system as you do.
Focus on what is possible
If you dwell on your child’s deficiencies, you will rapidly lose hope – and it is doubtful that your child will be helped either. Instead, focus on what motivates your child, what they love, what they can do – and build on that. Feda did this with what became the San Francisco Autism Society Swim Parties. Seeking a place where Mu could swim without discrimination, Feda worked to create these pool takeovers for autism famililes only – something that was even able to happen in a physically distanced way in 2020.
Ron Suskind does something similar with Disney, which he explains in his powerful book Life, Animated. One family has done this with cars, others have created farms. It is much of the reason The Piece of Mind Retreat exists – and most certainly why it is in Hawaii. When you flip the switch out of a deficit mindset, the possibilities are limitless.
Maintain your sense of humor
One of my first in-person encounters with Feda was watching her do a stand-up comedy routine. A sense of humor may not be the first thing that comes to mind when you think of autism advocacy – but you should reconsider. Humor is based on shared perspective. It exists because something that happens to one person is relatable – and funny – to others.
Indeed, humor is essential in bridging the gap between autism families and the rest of society. Because, in the end, the stories behind you not having anything to bring for the potluck (because your kid ate it or dumped it or peed on it) or why you missed the Halloween party (because your kid took off their regular clothes and refused to put on their costume and thus spent the evening streaking around your house startling trick-or-treaters) ARE, in fact, funny. And now the world is in need of our next autism-mom-turned-stand-up-comedian.
Feda was larger than life. Her energy filled a room and swept you up right along with her. She celebrated life fully – whether with a fresh manicure, a quirky clothing item, or a festive beverage. Indeed, the last time I was with Feda in person it was at an autism parents’ event involving ugly sweaters and a steady stream of good cheer. So while raising autistic individuals is, by nature, challenging, you must remember to lift your chin up – and grab another drink.
Every day of my life I am an autism mom, an autism advocate. Speaking for those who cannot speak. Communicating traditionally for those who communicate differently. Connecting families with resources. Supporting research, and education. Promoting growth and understanding.
And so are you.
Looking for more ways to honor Feda and continue her legacy? The National Council on Severe Autism (of which she was co-founder), provides these ideas.