Birthday parties can sometimes become very stigmatizing

This autumn you arranged a big party particularly inviting kids who sometimes might not get as many invitations to parties as their peers? How come you started this initiative, and how did you go about to make it become more than an idea?

The idea came from both my own experience and from stories I’ve heard from other parents. As late as yesterday I read another story in the newspaper about a 10-year-old guy, who has autism, and whose birthday party none of the classmates wanted to go to. The mother turned to Facebook to invite strangers in order to make people come. Every time I read those types of stories it totally breaks my heart, and I keep thinking; what if this is my daughter in the future?

Some years ago, I barely didn’t know anything about autism, apart from what I had seen in the movie Rain Man. Today I am ashamed of the stereotype view I had where I thought that autism was more or less only about having a specific niche interest.

Up until now, me and my daughter have experienced this exclusion which happens to many people with autism. You do all you can to make the best out of a situation as a parent, and still – strangers can come up to you and judge you as a bad parent due to what happens in a single situation. Or relatives start saying that you are invited to come to the party only if your child doesn’t touch anything. She is 3 years old – that is just not possible!

It really hurts to think about all those kids who feel excluded in different ways. And birthday parties can be one such thing which are very stigmatizing. It shows if you are a popular kid – someone whose party everyone wants to go to – or if it is a party no one prioritize. Also it goes the other way about invitations, what if a kid is the only one never getting any invitations because others think he or she is a troublesome kid due to having an ASD diagnosis?!

Thanks to my network and the contacts I have from having worked as an entrepreneur for many years I got the chance to borrow the Royal Swedish Opera House in Stockholm and arrange a party for 200 kids. I received some money from funds and reached out to volunteers through social media. There were so many people who wanted to help us so we had to close the applications for volunteers even before deadline.

It might sound harsh but the actual goal wasn’t just a great party for the 200 kids who participated – but rather to draw attention and reach out to media. To raise awareness about NDD diagnoses (including ASD) in general and the problem around being excluded, for example at birthday parties, can make a greater change also for kids who couldn’t come to this specific party. But of course -it was also supernice to see the kids having a great time at the party!

It was actually even one of the calmest parties I have ever been to. I didn’t really expect that to happen when we did all the party preparations!

What are the most important areas where you want to see a change for kids with an ASD diagnosis?

Something must be done about the long queues we have in Sweden to the child psychology centres and habilitation centres! It’s a shame that young kids have to wait for years until they get to meet for example a psychologist and get the possibility to get a diagnosis on paper and to start receiving the support they have the rights to get. All research says exactly the same: that it is important to get support and training already from the very first years! And still we let those kids wait in line. And furthermore, once they get to the habilitation centre it’s expected that the parents shall be the ones who do 90 -100% of the training.

For us, we finally got a decision about an extra person dedicated to support my daughter in the Kindergarten, but then it turned out to be impossible to find someone to recruit. In the end it worked out because I am not the quiet type of person, but I keep thinking about what it must be like for other parents? Like immigrants or parents who have an ASD diagnosis themselves and maybe don’t have the energy to fight for everything? Right now the person we finally recruited are on sick leave so we are back in a situation where we as parents spend 4 hours a day at Kindergarten together with our daughter, resulting in lost income and a difficult “life puzzle” in the end of the day.

Sweden is one of the countries with the highest taxes in the world and yet we cannot support the ones who need it the most. I have always been positive about paying taxes. But when I see how the support, like for example assisted care, are diminishing for the ones who are in really big needs, then I really start to wonder…

What would you like to say to people who don’t know anything about ASD and children with ASD diagnoses? How can they make a change in everyday life for families with those experiences?

First of all, it is important to gain and to have understanding. I believe that there are many people out there who still have Rain Man as their only reference when it comes to ASD. There are no such thing as a pre-defined way for every child with an ASD diagnosis, the spectrum is very wide and you also need to be aware of that it is an invisible disability.

Everyone can make a big change just by avoiding to stare and make comments. It is not a big deal if it is another kid who does it, but it becomes a big problem when grown-ups start doing it. They should know better. Even if I know that I sometimes could think for myself “why can’t that kid just shut up?” before I became a parent myself, I never would have started to give comments to people I know nothing about. But this has happened to me several times now – that strangers ask me about my daughter’s behaviour in a very negative way. They know nothing about us and what we have been through! To just give comments and moralize instead of helping out in a messy situation – that’s just not helping anyone.

Since 2016 have I received two diagnoses myself – ADHD and Asperger. I did know about the ADHD already before, but the Asperger diagnosis was new to me. I believe it made me understand myself a bit better. it was like a piece of a puzzle which found its place.

What do you wish from business leaders and politicians? What would you like them to do differently?

First of all, it’s a question of money! There is a total lack of resources today; for the people working with those children the wages are too low and the working conditions too bad! If people get almost the same pay for doing nothing, how will it ever be possible to attract people to work within this field? There are so many amazing people doing those jobs, and if they would have had the same wage as for example a plumber or a carpenter the problems we see now would have been solved.

When it comes to business leaders I want to see more engagement when it comes to work places and jobs for people with ASD diagnosis. I am really afraid of that my daughter won’t get a job in the future – that she won’t have the possibility to contribute to the society and feel needed. I have had my thoughts about starting a recruitment agency with this focus. There are a few out there already, but I want to do it a bit differently.

How are you engaged in those questions at the moment?

Right now I have most of my focus on our private family situation. First of all I need to find a new person to work with my daughter at Kindergarten. I am also on the board for the Swedish Red Cross, I have lectures like this one today, I am writing on my fourth book and have some consulting assignments. I am full of ideas, thoughts and dreams but so far I haven’t started anything new within this field. My biggest focus right now are on my kids.