This is part 2 of the interview we ran yesterday with mom Joni Hill who talks about finding out that her twins are autistic. If you missed Part one, you can read it here.
TNF: You once wrote that many people have a cocktail party understanding of autism, that struck me, tell me about what you would like people to understand about Autism?
Joni: Associating puzzle pieces with autism doesn’t help my children. Recognizing autism so that you can actually help to accommodate autistic people does. Being able to rattle off the latest CDC prevalence rates doesn’t make the world safer for my son and daughter. Understanding that their challenges don’t diminish their worth as human beings does. Lighting a building blue may tell us all that autism exists, but it doesn’t help us understand what it is or how we can help to support those who live life through its lens. It’s the conversations that matter. It’s really time we start having conversations with all who will listen about how to move from awareness to acceptance. I am always happy to answer questions about autism and we also are very proud of Cosmo and Vivian and have never hidden their autism.
TNF: What do you find is the public reaction to your kids? If any?
Joni: One thing that really bothers me is how judgmental people can be if they observe my daughter having a meltdown in public. I’d like those people who look upon my sweet girl as a brat or that we are bad parents to understand that much of her behavior is a reaction to a complete sensory overload. Kids with sensory sensitivities often have trouble enjoying everyday activities like play dates and school functions. Extreme sensitivity to noise, crowds, touch, textures, bright lights, bothersome clothing, and new experiences are often overwhelming for kids with sensory problems. I wish people would just be more compassionate and not so quick to jump to conclusions about what they think they are observing. Most kids with autism also have big issues with Sensory Integration.
TNF: What would you like to change about people’s perceptions of autism?
Joni: I think a tremendous shift is happening in the autistic community where autistic adults are starting to come out and tell their stories and be heard. This is probably the single most valuable resource for me now. My favorite book is called, Ido in Autismland by Ido Kedar. He is a boy with autism who is non-verbal and presumed to be cognitively very impaired. He learned to communicate using a letterboard, spelling every word by touching each and every letter, to painstakingly communicate how he is very much aware and incredibly intelligent, just trapped inside of a body that is not in sync with his mind. The other big book which everyone has been talking about is The Reason I Jump by Naoki Higashida, which Jon Stewart showcased on a recent Daily Show.
This is a valuable resource that nobody tells you about as your kids are first diagnosed. All these so called experts who are instilling fear and panic in parents need to also be reading this stuff but there is a big divide in the community between those who want to cure their children and those who love and accept them for exactly who they are. Who would know better about the challenges our children are going through than someone who went through it themselves? It is the height of arrogance to me that any one calling themselves an expert would not inform themselves by learning from adults with autism.
TNF: What resources would you recommend?
Joni: When we first got our kiddos diagnosis, before we knew any better, Autism Speaks was the biggest and most visible resource, we knew very little and wanted to learn as much as possible so we read all the “toolkits” and advice they dole out to new parents.
At first glance Autism Speaks appeared to be a wonderful organization and supportive of the community by raising tons of money. That was until the founder, Suzanne Wright, came out last year and wrote a “call to action” letter. It portrays autistic kids as a terrible burden that wrecks marriages and bankrupts families. It labeled autism as tragic and devastating and must be cured, Eugenics plain and simple. After this letter was published, the details about Autism Speaks and its priorities became front and center. They spend 40% of money raised on trying to find a cure, 40% on PR and advertising, and only 4% on services to actually help autistic people. Not to mention they do not have one autistic person on their board. So how can they speak for autism”? They should rename it “Autism speaks for some parents who cannot accept their children’s diagnosis”
Maria and I have always loved our children completely and without condition. They are absolutely amazing little beings, why would we want to change who they are? If you say you want to cure your child you are essentially saying that you want a do over and a different child than the one you have. I think it’s true that no parent wants their children to struggle and suffer in life but that’s why we must change the conversation, real acceptance will only come when we move past simple awareness.
I do think that Maria and I are unique in some regards to other parents of kids with autism because we are gay. We have spent most of our lives being discriminated against for who we are and we know first hand how that feels. It is our job to protect Cosmo and Vivian as much as we can from the dehumanizing language of Autism Speaks. We will never light it up blue and hope to enlighten as many as we can to understand why and join us in boycotting them.
There are many organizations that are dedicated to helping support autistic people. The Autistic Self Advocacy Network (ASAN) and the Autism Society of America are both terrific. I also like The Golden Hat Foundation, Kate Winslet is one of the co-founders. These organizations are helping to support people with autism in real and meaningful ways.
TNF: How have you grown as a parent throughout this process?
Joni: Yes, inexplicably yes. I can only say that I feel as though I am the lucky one to see the beauty of the world through my children’s eyes. On a personal note this is why I photograph them so much, I want to show the world that this is what autism looks like.
TNF: What advice would you give to a parent who is in the beginning stage of finding out their child has Autism?
Joni: It’s a tough road in the beginning to be sure. First of all, know that you are not alone and seek out parents who are a bit further along on their journey to share their experiences and stories. This is not only a great comfort but a phenomenal resource, other parents know a lot. We are all out there leaving no stone unturned, looking for the right fit and the right kind of help for our children.
In the beginning, try not to hang on every word as the truth or answer from all the experts who tell you what you have to do. So much of the tenor of these early assessments is about how it’s your moral imperative to somehow cure your child and the clock is ticking away and the longer you wait the worse their chances will be. This is such horrible advice and in fact the opposite of helpful.
I wish someone had told me to immediately begin to read and listen to adults with autism and their experiences. For example, THE EXPERTS tell you that you must use the ABA approach because it’s the only scientifically proven approach. That is simply not true, how about listening to what adults who went through years of ABA therapy have to say, that they have PTSD from this approach? The saying that you will hear many times, which is in fact very true, “If you’ve met one person with autism, you’ve met one person with autism”. So how can there be only one blanket approach to help our children learn?
Always listen to your children’s voices. Even if they are not verbal you must learn to listen to them, they have emotions, they are not to be reduced to behaviors (as ABA would have you view them). They are complex and emotional and need your voice to advocate for them. If a therapy promises to have all the answers run the other way. Be careful to guard their self esteem at all times, our litmus is that a therapy should help them learn to overcome some of the challenges they face but never at the cost of their emotional well being. Anxiety and fear are very prevalent in autism and we must be ever vigilant to protect them from a therapy approach that only exacerbates their anxiety.
Lastly, I would just like to say that our family is just like your family in many ways. We all have challenges, everyone struggles with something. But at the end of the day we all just want to do the best we can for our kids.
Thank you Joni for an open, honest, inspirational interview, it was an absolute pleasure and I know this interview will be a tremendous resource to our readers.