We are surrounded by advertising at the moment. It’s Christmas. The creative advertising juices are in full flow: the funny, the emotional, the nostalgic. Even the power of absence, in the case of Coca-Cola who pulled their Christmas advertising campaign to donate the money to relief in the Philippines, thereby gaining themselves more positive press than an entire convoy of red suited Santa’s could ever do.
I like to think of myself as relatively immune to the power of advertising, but I know that I’m deluding myself. I’d like to share an experience that I had recently…
Sometime last week, one of the ladies who follows my Facebook page sent me a link to a video clip of an 11 year old Autistic girl named Jodi performing at a New York Fund-raising concert. Jodi played piano and sang the song “Firework” along with the pop star Katy Perry. My follower, a new Autism Mom who lives in Australia, had been deeply moved by Jodi’s performance. She wanted to share it with me, and hopefully with the other followers of my page.
I watched it the first time:
Whilst doing so I got distracted by The Boy who was doing his best to walk. When he got bored of my applause and went back to his cars, I carried on watching the video, in time to see Jodi and Katy Perry begin their performance. Jodi played and sang excellently, no sign of nerves or anxiety, no apparent difficulty in dealing with the huge amount of sensory input that must have been happening for her throughout. Katy Perry was clearly touched by the performance and was openly crying at the end. I thought to myself “that is such a great advert for what individuals on the spectrum, especially girls, can achieve”. I posted a thank you note to the lady who had shared it, and scheduled the video clip to appear on my timeline the following morning.
And then a little voice in my head, said “Hey, Liz, you should’ve watched the WHOLE video. Always check stuff thoroughly before you post…What did you miss at the start of the video…?”
I watched it the second time:
The first 3 minutes of footage are a compilation of clips from interviews with Jodi’s parents talking about her diagnosis and her progress, interviews with someone from her ABA therapy team, and footage of Jodi in therapy as a younger child.
Now, I was having a very hormonal time last week. I felt tired and ill, and unusually low in mood for me. I’d had a difficult meeting at Melon’s school, I was anxious about her future, I was anxious about going back to work.
And as I watched the interview compilation, something the therapist said hit me like a truck; “when we started working with Jodi……..she could barely put a sentence together”
Boom. There it was. The one aspect of Autism that makes me most anxious for Melon’s future.
Her ability to communicate with the world around her.
The development of “functional language”
Suddenly, out of nowhere, I was crying.
Not just a bit teary.
Proper big, salty, can’t-see-to-type tears.
Then came the swirling doubts: What about our chosen plan; to educate Melon in the mainstream, no ABA, just 1-1 and small group in the classroom with some work on her sensory issues, with some parallel exercises on emotion recognition and sequencing; what if that wasn’t enough? What if we were doing Melon a disservice by not including more intensive therapy? What if she never played the piano at a fund-raising concert.
I put the ipad down and wandered into the kitchen.
I made a cup of tea. I’m British it’s what we do when we’re emotional.
I tried to get myself back under control. It took about 10 minutes.
And then the little voice in my head piped up again: “Hey, Liz. Didn’t that footage show the little girl becoming distressed? Which charity was the fund-raising event for? What is the charity’s agenda? Always check this out before you post stuff”
I watched it the third time.
Jodi’s parents spoke eloquently of their fear and distress at their daughter’s diagnosis, and her behavioural and communication difficulties.
The therapist said “when Jodi came to work with us at age 3 she could hardly put a sentence together and she got really distressed if we tried to disrupt any of her routines”
The footage showed a 3 year old girl in a very distressed state, presumably as a result of a routine/chosen activity being interrupted, and slapping at her therapist. Jodi was crying and shouting.
Then the footage showed a self-assured 11 year old Jodi dressed in evening wear, greeting people backstage politely as she walked out to perform to a packed concert hall with all the Zen calm of a yoga master.
Then the performance, the standing ovation, her parent’s tears of pride and joy.
And then I saw it. I saw the whole thing. I saw how well it had been put together. I saw the implied message. I realised what they had wanted me to see…
“Imagine, a 3 year old child who can’t speak properly and becomes distressed if you interrupt her routines. How awful. Look how bad her behaviour was – the screaming, crying and slapping. Look how great our therapist is. Look how confident and successful the girl is now. Our way is the way forward. Join us Donate to our charity”
The charity. Who were they? What were they about?
I couldn’t find much information except for their own website. I asked a few page admins I know in the US, they had never heard of the charity. So I went back to the website. At first glance it said a lot of positive things about supporting autistic individuals to fulfil their full potential in education, work and life experiences. But in their research section I did see phrases like “causes of autism…treatment for autism”.
And There it was again. The curist agenda. Slickly packaged, less overtly menacing than the scaremongering tactics of Autism Speaks. But still playing on the fears and emotions of autism parents, still implying that autistic behaviours such as non-verbal communication and routine following are undesirable and must be eliminated. Still speaking of Autism in terms of an illness that needs to be treated. They didn’t use the word cure, but the undertones were clear.
A few google searches later, and I discovered that the co-founder of the Charity is on the board of Directors at Autism Speaks. I discovered that the New York charity and Autism Speaks are holding a joint fund-raising event this month.
So I pulled the scheduled post. I contacted the lady who had sent it me, I apologised for having gone back on my word about sharing the video. I explained my stance on Curism, and that to show the video on my timeline would mean that I was inadvertently promoting an organisation who, whilst they may do some very valuable work, promoted a view of Autism that I had publicly stated my disagreement to.
What I don’t know:
I will never know if little Jodi would have made the same progress in terms of her communication and other needs without receiving ABA. I’ll never know whether Jodi could have done that same performance on that stage if she’d received the type of intervention and support that Melon is getting.
I don’t know how much progress Melon will make with her current support package.
What I do know:
I do know there are autism parents out there whose children have a far more difficult life than Melon , and who swear by ABA. I know there are parents who have exhaustively researched every single option to help their child move forward, develop and achieve, and have decided that ABA is the way to go. I know there are families who have no choice but to utilise ABA as their state will fund no other interventions. I’m sure there are Autistic individuals out there who feel that ABA improved their chances in life. I have no problem or issue with their decisions and opinions, we all have to make difficult decisions about what we feel is best for our child. Our decisions about Melon have been different, but I don’t judge others’ for their decisions as long as they have made an informed choice.
I also know there are many Autistic individuals who are vehemently opposed to ABA, and feel that it’s practice is tantamount to abuse. I accept their opinions and testimonies.
I know that when it comes to fund-raising, distress and upset are far more effective at motivating people to donate than cuddly footage of Melon playing with a tangle toy could ever be. I accept that this is part of the game.
What I believe:
I believe that Autism is NOT an illness. There is no “epidemic”.
I believe that rates of Autism are rising because of improved assessment and testing procedures, because parents are more aware of early warning signs and are bringing their children for testing more frequently, because the boundaries of what constitutes “autism” have been broadened to include conditions such as PDA and Asperger Syndrome.
I believe that many of those diagnosed in the “epidemic” of Autism will be higher functioning, people (adults and children) whose Autistic traits may have been missed or put down to behaviour/mental illness/ eccentricity in previous, less aware times. I believe that these people will be able to live full, happy, worthwhile lives, with whatever level of support they need along the way.
I believe in the path we have chosen to take with Melon in terms of her support.
But, the simple fact remains. Last week, for at least 10 minutes, an advert (because essentially that is what the video was) drove out what I knew and what I believed. It drove shafts of fear and doubt straight through my core. For that short time I felt and believed exactly what the people who had made the video wanted me to believe.
And that, my friends, is the power of advertising.