Discuss and debate the issues that mean the most to you.
Austria is known as the country that brought the world the waltz, Wiener schnitzel, and lots of really yummy pastries. It’s also the birthplace of Freud, a little trivia factoid that might lead you to assume that mental health would be an open topic, and not a taboo subject. But as I’ve learned in my experience as the mom of an autistic child, you would be wrong. Austria is ahead of the game in so many ways, but when it comes to autism, it might as well be the 1950s.
I’m a Canadian married to an Austrian. I had lived in Vienna in the 1990s as an angsty teenager due to my father’s job with the foreign service; then, while living in Toronto, I met my future husband. Twelve years ago, after getting married, we moved to Vienna and I was ready to make a life here.
I weathered the culture shock and Vienna became my home. I embraced it through all the ups (balls in palaces!) and downs (being yelled at often in German in the grocery store!).
In 2011, I gave birth to a beautiful little boy who we named Raphael. I loved motherhood, and I stayed home for his first 11 months until I started a great job at an intergovernmental organization. We lucked out in finding a daycare to take our son when he was a year old; in Austria, maternity leave is usually two years and not all daycares will take a child under 2 years old. We hired a great nanny, and the first year was perfect (I say this through rose-coloured glasses, because I’m pretty sure it was far from perfect and that there was yelling, sleepless nights, and plenty of days where I forgot to wear deodorant). Our son developed normally.
But just after he turned 2, we were suddenly fielding phone calls from the daycare. Our son was acting out. Initially, I just shrugged it off and assumed he was acting like a typical 2-year-old or taking after me when I'm hungry. We started being called into meetings, and it quickly became clear what the problem was, in their eyes: I had committed the crime of being a full-time working mother. I even found out later that they had grilled our nanny over the hours I worked. One of the staffers once told her, “If my child was having issues, I would quit my job.”
As the months passed, more issues arose, and one summer day, I picked him up from daycare and I was given a letter. I opened up the envelope to find a one-page assessment declaring that our son had Aspergers.
In complete shock, I called a therapist with autism experience to look over the letter. She was floored that the daycare center had casually “diagnosed” him without our permission, and after only an hour of observation. To make matters more ridiculous, I found out later that the person who had written the letter was a student. I look back at this event and wish I had had the chutzpah to lose my proverbial shit, but I was desperate to keep him in daycare.
Our son’s behaviour got worse and we found another private daycare that was willing to take him for a trial period. For four weeks, we tried in vain to integrate him. Their policy was that he had to enter the classroom of his own volition. Both my husband and I spent countless hours sitting in a drafty cloakroom, willing our child to go inside.
Towards the end of the four-week trial period, the director of the daycare pulled my husband aside and asked him how the birth had been. Caught off guard, he said “C-section.” When he told me later that she had asked, I may or may not have thrown a kitchen utensil.
On the last day of the trial, the director sat me down and said, “I heard you had a C-section. This must be what is causing him to have issues. I really suggest rebirthing him.”
Dumbfounded, I thanked her and said, “Yeah, I’m late for work. Maybe next week we can schedule in some rebirthing.” And that was the last time we went to that daycare.
Defeated, we returned to our old daycare that we would eventually be kicked out of four months later. We ended up moving to another district, and our son is now attending a fantastic “integration” kindergarten. This is a public kindergarten that has a small percentage of special needs children in each class. We are so happy in our new kindergarten even though they will only keep him until 1 p.m. (I don’t think I have to reiterate how much we love our nanny.)
We received a semi-diagnosis of autism (regressive autism) when our son was 3. He ended up losing all of his vocabulary soon afterwards, and we looked desperately for a therapist for autism. There were slim pickings, and tried a type of occupational therapy that ended up being useless. While Austria provides amazing health care and even sends people on free spa retreats for “burnout,” somehow autism therapy is not covered here.
We were able to hire a therapist with years of autism experience. Again, nothing was subsidized by the government, and since therapy is not offered at home, we could only manage and afford one hour a week. The recommended amount of therapy is 20 to 40 hours a week, so we were close (sarcasm).
Two-and-a-half years since the diagnosis, we are finally on the right track: we have hired a psychology student and another specialist to work with our son six to eight hours a week while they are overseen by an amazing Applied Behavior Analysis therapist (she worked in New York and also cannot believe the state of autism care here — and the lack of lawsuits).
There are some autism centres in Vienna, but they are overwhelmed. Frustrated by being ignored and getting no support, I started a Facebook page called Autism in Vienna last September. A year later, the page has almost 900 followers, and I try to update it every couple of days with memes (so trendy), tips and articles. I’ve been able to host a couple of seminars about popular and evidence-based therapies, parent nights, and a Therapy Networking Evening where therapists can meet and collaborate. It has been such a relief to hear other parents say what we had experienced: that they are at their wits’ end with the state of autism support in this country.
When I get mad, I get shit done, and a few months ago I decided to start my own autism centre here in Vienna. The concept is not completely new, but for this city, it will be. It will consist of a playroom, co-sharing therapy offices, and a coffee shop where I hope we can eventually employ amazing people with autism. I have just recently submitted my paperwork to register as a non-profit organization, and soon I will start asking for funding or donations. I hope that by the spring we will have a location, that soon we will have a strong and amazing community, and that this will lead to more awareness and support in general.
I also plan to approach different ministries and to argue that therapy is the only way to ensure a better future for people with autism. Here’s a simple formula: more help at a young age = less cost to the government later on. You likey, ministry of health? Yes?
Things won’t change overnight, but this is a small step in the right direction — or a very complicated and expensive plan for me to finally have a cup of coffee in public with my son.
I have been asked why I don’t move back to Canada; it’s a valid question. There are various reasons why we stay, but I think it boils down to the fact that this has become our home, and instead of letting this sorry situation continue, a huge metamorphosis can take place. The next few months will be a challenge, raising funds and not giving myself alcohol poisoning. But this could be the start of something amazing for the city I truly love.