International Interview: With Nicole Rogerson, founding Director and CEO of Autism Awareness Australia
By David Celiberti, PhD, BCBA-D
I recently had the opportunity to interview Nicole Rogerson, founding Director and CEO of Autism Awareness Australia, a national not-for-profit organization. She is one of Australia’s leading advocates for the awareness and understanding of Autism Spectrum Disorder, and is a staunch supporter of science-based autism treatment. Nicole is frequently asked to speak about autism with appearances on various Australian programs such as 60 Minutes, the 7.30 Report, the Today Show, A Current Affair, Today Tonight and Australian Story, as well as in the Australian Women’s Weekly. When her son Jack was diagnosed with autism in 1999, Nicole left a career in marketing and public relations in order to pursue better support, services and representation for families affected by autism. Since establishing Autism Awareness Australia in 2007, Nicole has spearheaded numerous national education awareness and fundraising campaigns to do just that. The most prominent of these is Light It Up Blue, a campaign where Sydney’s Opera House and other iconic landmarks are lit up blue for World Autism Awareness Day. Nicole has led many other campaigns and events, which have inspired, touched, and educated Australians; including production of a short film on autism , ‘What are you doing?’, for school children; and three television community service announcements.
Q: Nicole, by way of background, can you tell our readers a bit about your family?
A: My husband and I have two sons, Jack (18 yrs) and Tom (13 yrs), and we live in Sydney. Jack is on the autism spectrum. I’m afraid we experienced that all-too-common story of fumbling our way through our child’s diagnosis. Jack was our first-born child and we simply didn’t see the delay (or didn’t want to). He didn’t always look when you called his name (‘because he is an independent person’), he didn’t talk (‘because his father and mother never stop, so he can’t get a word in edgewise’), and wasn’t interested in toys (‘probably too gifted to be bothered playing with them’). He was our first child, we didn’t have any friends with children and I considered myself way too cool to join a mothers group; so the fact that he wasn’t developing like other children was news to me. “He is fine,” we would say to anyone who asked about his speech delay. Is it possible to love a child so much, that you can be so blind to what was increasingly clear to those paying even a minute’s notice?
Nothing can prepare you for the day you sit in a doctor’s office and they first use the word autism. It is the stake through your heart, the words that, once said, are now your new truth. No going back. He has autism. Here are the tissues, good luck.
Jack was 3.5 when he was diagnosed in 1999. Any doctor with a degree out of a cereal box could have diagnosed him at two, but our laissez–faire attitude and state of denial kept autism out of our lives for that little bit longer. Putting it off, I learned, doesn’t make it go away. When Jack was diagnosed I had no clue what to do next. The pediatrician’s appallingly limited advice wasn’t exactly a step-by-step guide in how to help this child! I was on my own. Google was in its infancy, but there was still a good array of so called “therapies,” miracle cures and heart -wrenching stories to keep you reading.
I didn’t have to wade through the options long before I came across the one that seemed to be recommended by all of the sensible grownups around the world. Applied Behavior Analysis (ABA) made sense to me right from the start. It wasn’t rocket science – just start teaching him the things he can’t do by breaking them down into small, teachable steps and then ‘reinforce’ the behavior. Then repeat.
I read the books (thank goodness for Catherine Maurice), bought the manuals, educated myself on how to do this; and then went looking for people to help me. This is where our luck started to change. I met Elizabeth Watson, who, along with Michelle Furminger, would run Jack’s ABA program for the next 10 years. ABA would teach Jack how to talk, how to read, how to behave, how to be social, how to live with us, here in the real world. Autism was never to be an excuse in our family. The goal was always, and still is, to take away all of the problems autism brought to our door. Jack was going to live with us, not with autism. I was resolute on that point. I won’t bore you with the story [insert amazing autism story / blow by blow] of Jack’s early intervention and school years. You would have read it all before. I can simply say that ABA gave me my boy back – so I fell in love with it and there I have stayed.
If you’re ever lucky enough to meet my Jack, you’ll meet a well-mannered, polite, funny, empathetic young man who de-lights everyone he meets. His teachers at school are his unofficial cheer squad. I am just so proud to be his Mum.
Q: Aside from Autism Awareness Australia, I understand you are also the Co-Founder of the Lizard Children’s Centre, Australia’s leading early intervention centre for children with autism and developmental delays. Tell us about your roles within these two organizations.
A: I am the Director of the Lizard Centre and CEO of Autism Awareness Australia. ABA programs were scarce in the late 1990s/early 2000s in Australia and there were very few professionals well organized enough to increase ABA’s profile and reach. I was passionate about more children having access to the kind of quality early intervention my son had, so in 2003 I joined with Elizabeth Watson (Speech Pathologist who had run Jack’s program) and started the Lizard Centre. We wanted to increase the profile and reach of ABA and hopefully set up a career path for people wanting to work in the field. So our little company started, and then continued to grow and we are now Australia’s largest private early intervention clinic.
I have now been lucky enough to witness hundreds of children learn and develop through their ABA programs and it still never ceases to amaze me. The very humane nature of what ABA does, the inherent kindness in teaching a child a skill they weren’t learning on their own, and surrounding them with reinforcement – what’s not to love about that? ABA is a ‘Yes we can’ kind of therapy – I was hooked from the beginning.
In 2007, I was inspired listening to Catherine Maurice speak at the Association for Behavior Analysis International’s First Annual Autism Conference in Boston. She perfectly articulated the frustration I felt with families languishing in a sea of misinformation, pseudoscience and this so-called ‘democracy of therapies.’ I was determined to go home and do my best to better educate families, and indeed the rest of Australia, about autism. So that year, I began Autism Awareness Australia, which is now the nation’s leading not-for-profit autism education and advocacy organization. We have rolled out some pretty great projects since then, but lighting the Sydney Opera House blue each year for World Autism Awareness Day, has been a highlight.
Q: What is autism treatment like in Australia? Can you share de-tails about any national legislation that has influenced the delivery of services?
A: There has been great improvement in this area in the last 6 years, but we still have a ways to go. Despite publishing Best Practice Guidelines in 2006, which rated ABA highly and recommended a minimum of 20 hours a week of early intervention, the Federal Government refused to fund it. They did however fund children to have $6000 worth of early intervention per year for 2 years until the age of 7. Sadly, this saw the amazing growth in children receiving 1 – 2 hours per week of therapy, mainly with a speech therapist or OT. Not that either of these are harmful per se, but on their own, without the back up of intensive behavioral treatment, we know that makes them as good as useless. Sadly, ‘Evidence Based’ is a term thrown around in Australia as easily as low-fat – the devil is always in the details.
In 2012, after further work, the Federal Government released the Good Practice Guidelines (sadly, this is not a joke), which watered down the recommendation regarding intensity (15 hours/week now recommended). They did however put in a rating system for therapies that saw ABA come out on top and indeed some therapies come off the approved list (Sensory Integration Therapy).
It is not all bad though. ABA has gone from being considered a version of child abuse in the late 1990s to now being recognized as the therapy with the most evidence-supporting efficacy. Sadly, as there are limited funds for it, it is still being accessed only by families who can: a) afford it, or b) beg, borrow and steal to make it happen. ABA still takes hits from ‘specialists’ who recognize it is considered best practice, but say that other less-intensive therapies work just as well. Parents are voting with their feet and they understand intensity is what is needed.
Australia is just about to implement a National Disability Insurance Scheme (NDIS), which will bring universal disability care to all Australians. The scheme is in its infancy, but reading the overview of the legislation and its commitment to providing individuals with early intervention, which is supported by actual evidence, it might mean funding will become available for families, which ultimately should see more children being able to access ABA for their early intervention.
Q: What resources do parents turn to in order to learn about autism treatment? Do these resources recognize best practices based on scientific evidence?
A: Sadly parents are still under-supported at this time. The government set up a network of ‘Autism Advisors’ in each state which were charged with meeting parents just after they had received their diagnosis, give them some information and then process the paperwork for them to access the limited early intervention funding. Sadly, they were also prevented from being able to give advice (I hear you, autism advisors who can’t give direct advice). So, parents still turn to Google – with all its wonder and pitfalls. One government-made website that does quite a good job is the Raising Children Network, which has a guide to therapies for families.
Still, there is a strong undercurrent of ‘let families find the therapy that works best for their child’ and ‘people must have choice.’ All true, but we must also protect families from the (some time well meaning) charlatans who dwell in this industry, and give them the tools to make sound decisions for their children.
Q: Have the professionals in your country organized to advocate for evidence-based autism treatment? What about the parents? If yes, are they organized or is everyone fighting on their own? If not, why do you think they are not?
A: To be honest, I think this is where Autism Awareness Australia has come into its own. Backed by some pretty smart parents, we have run campaigns such as ‘1 in 100 need it funded’ in this last Federal Election, and we are, when possible, walking the halls of our national parliament trying to make change in autism policy in Australia. Sadly, we are sometimes held back by the health bureaucrats who still run some generic special educational style programs, whose careers have been made on the ‘low intensity’ services we are so desperate to make a thing of the past. Just last year, I organized a group of leading ABA service providers, academics and State-based interest groups to come together to form the National Organization for Applied Behavior Analysis. It is our goal to make sure all of the leading people working in ABA in Australia are working together to promote and raise awareness of ABA within all areas of the Australian community. We also wanted to educate people on what good quality ABA actually involves. Unfortunately, we have some less-than-reputable service providers running low intensity ABA programs (is there such a thing?) to better accommodate the funding families have access to. I am staunchly opposed to service providers retro-fitting their ABA programs to accommodate available funding. Sadly, the ABA field is not immune to charlatans either.
Q: I understand you shared your story at the United Nations. Can you tell us about that experience?
A: Autism Awareness Australia has achieved some pretty amazing things over the last few years, and I was invited in speak about them in 2011 at the United Nations in New York. I was invited back in 2013 to premiere a documentary film I made called ‘What are you doing? A film about autism.’ The film was made to better educate children in a mainstream setting about what autism is, so they can better understand their classmates who are on the spectrum. The film stars siblings and friends of children on the spectrum, who explain to their peers what autism is all about. I am pretty proud to say that last year, with the help of the Federal Government, we distributed it to every elementary and secondary school across Australia. I believe in walking the walk of inclusion, not just talking the talk.
Q: Any final thoughts?
A: Absolutely! I’d like to ask the professionals reading to remind themselves what fabulous humanitarians they are. I am constantly reminding my staff how brave and determined they are. You simply don’t sit back assessing a problem and writing a report on it. That is merely stage one for you! You analyze, collect data, write procedures, implement them, re-assess, graph and chart progress. You don’t talk the talk of intervention, you run the walk! You teach children skills which gives them independence. You give them freedom from their disability and you give parents their children back. In short, you’re my heroes.
No fair Nicole! Parents like you, are my heroes. My colleagues and I choose autism, parents do not. Working with parents who roll up their sleeves to help their child is an incredible reinforcer to us. Seeing parents who dedicate their blood, sweat, and tears to helping other parents have a clearer path, is nothing short of inspirational.
Thank you for taking time to share your story with our readers.
Celiberti, D. (2014). International interview: With Nicole Rogerson, founding director and CEO of Autism Awareness Australia. Science in Autism Treatment, 11(1), 28-31.