My husband and I downloaded and had a look at Olga Tennison Autism Research Centre, called ASDetect, tonight. To say we were both uncomfortable with it would be an understatement.
As we looked through the app we noted it’s use of the colour red when ever you needed to choose a response that indicates your child behaves in a way that is considered atypical. From the Olga Tennison Autism Research Centre (OTARC) blog:
Through a series of videos and questions, ASDetect guides parents through the identification of potential “red flag” signs of ASD. These “red flags” can be raised when young children repeatedly do not:
- Make consistent eye contact
- Share smiles
- Show their toys to others
- Play social games
- Point to indicate interest
- Respond when their name is called
“All typically developing infants are motivated to be social, look at other people’s faces, learn from them and copy. Children with ASD are not doing this—and we can now accurately identify this at a much younger age and take action, with the help of parents,” said Dr. Barbaro.
The information OTARC gives in their promotion of the app jumps straight in to othering and stereotypes. Not a great start, and it was continued throughout the app.
The prompts were consistently negatively worded, and were based almost exclusively on simplistic pathologising, and stigmatising stereotypes of autistic behaviour, designed to feed on a parents fear that their child has something wrong with them.
At the end of the questions, we were told our (fake *winking smile face*) child, who we purposely answered “rarely” for all milestones asked about, was “at risk” and that we should see a doctor. This information was sitting inside a bright orange box with a big black exclamation mark in it that screamed “look out, all your worst fears are about to be confirmed and your life will change for the worse forever”. Okay- not literally, but you get the idea.
When we answered the questions honestly with information accurate for when our autistic daughter was 12 months old, there was no exclamation mark, but a simple recommendation to repeat the test in 6 months. So, she would have slipped through their test at that stage. I’m not surprised to have found this, given the nature of the questions asked, but it makes me wonder how confidently OTARC should claim their app will improve diagnosis rates in very young children.
I think it is important to point out that there already seems to be the feeling (at least in comments on OTARC’s Facebook page) that use of this app will help people get a diagnosis when they may find it more difficult without the app. I just can’t see how this could be true. If you take the information from an app to a practitioner who is likely to be open to diagnosing a young child as autistic, then they will look at the information with an open mind. They would also listen to your concerns with an open mind if you didn’t have the app. Conversely, if the practitioner you see is not inclined to diagnose a young child for whatever reason, having the app information is unlikely to sway them.
Parents need to be aware that the app is collecting information into OTARCs database, and that this data will identify their children. OTARC are also using this app to try and entice people to give permission to keep the information they enter as part of their further research. I’d recommend participants think carefully before selecting the option to participate in OTARC’s research.
OTARC do not have a good track record of actually wanting to listen to autistic people and help them in the way they wish to be helped. They are interested in gaining credibility as a major player in the industry of autism awareness and support, so they can attract funding to continue their research. They are strong advocators of “Early Intervention”, which is code language for getting your child into therapy- ABA or Social Skills training or Positive Behaviour Support… which are all behaviour modification therapies that autisitc people will tell you are awful to endure and cause long term negative effects on self esteem, sense of worth and autonomy. They believe it is appropriate to run information events about autism and improving quality of life for autistic people, with out having any autistic keynote speakers. When they are confronted about this they reply that autistic people are welcome to attend and join in the conversation by asking questions which is dismissive and condescending.
This app is designed to prey on parents fears. I have no doubt it will serve to help increase parents anxieties, which concerns me greatly. Pretty much the thing that autistic people (children and adults) need the least right now is something that helps people feel more worried about their existence and more scared about having them in their family. Autistic people do not need people to be scared of autism. Autistic children do not need to be rushed into behaviour modification therapies, they need to be loved and supported and nurtured.
Can I make a couple of suggestions to parents who might be considering using this app? If your child is young and you think they might be autistic- don’t panic. Start out by recognising that your child has some challenges most kids don’t have. Some of those challenges are sensory. Some of those challenges are in interpreting language and social communication. Instead of pouring over an app that will make you feel more worried, you can spend some time reading the writings of autistic people who talk about how they manage their challenges. Even better, you could read the writings of autistic parents of autistic children for information about how they respectfully parent their children to meet their needs. There are lots of articles available, visit my Facebook page, I link to them regularly. Visit Respectfully Connected, it is an awesome resource. Give your child some time. Don’t assume that just because things look scary and overwhelming now that your child will be unable to grow or progress. You have time. Don’t panic.