Marc, you indicated some time ago that you would like to say something about this calendar item. What does World Autism Awareness Day mean for you, and why is it important?
‘I always read the column NWO celebrates… with a lot of interest and pleasure. And so, I thought it might be good to step out of my comfort zone for a bit and find a day on your calendar on Joost that I could contribute to. And I found that day, namely World Autism Awareness Day.
Each year this day is celebrated worldwide on 2 April. In the Netherlands, World Autism Awareness Day marks the start of a week of activities to promote autism awareness. During this week, many events are organised for people with Autism Spectrum Disorder (ASS) and for people who want to know more about this. This year, the week was concluded with a congress at VU Amsterdam on 9 April organised by the Dutch Autism Association (NVA). For an overview of the many activities organised during the autism week, please see the programme (only available in Dutch).
Besides the many meetings and activities organised, the media often devote attention to autism during this week too, which is a good thing. However, I feel it’s a pity that the media often pays little attention to the milder forms of ASS. There are different forms of ASS and, in addition, these forms manifest themselves to different degrees in each person. So the symptoms of ASS could be clearer in one person than in another, and I think people should be made aware of that too. I have a reason for saying that, of course, because I have a form of ASS in which the symptoms are less evident. So, when I talk with people about this, they often remark that they did not notice I have ASS. And I can understand that because I only discovered it myself in 2013. I’d been living my life for almost 30 years without knowing that I had ASS.’
What do you think could be improved in the area of measures and possibilities for people with a form of ASS?
‘There are several things that I think could be done better or differently, but two stand out in my mind. The first point concerns establishing a diagnosis. When I received my diagnosis, the DSM-V (the diagnostic and statistical manual for psychiatric disorders, ed.). was being developed. The investigator who provided me with a diagnosis back then did so on the basis of DSM-V. At a later stage, a supplementary diagnosis was given on the basis of DSM-IV because this was required by the autism centre where I could be treated. That DSM-IV diagnosis, in my case Asperger’s, helped me considerably because it is a more specific diagnosis than just ASS. After my diagnosis, I initially read a lot about autism, and I could not clearly recognise myself in many of the stories and descriptions, which meant I started to doubt the accuracy of the diagnosis. As soon as Asperger’s was added to my diagnosis, I was able to search more specifically and so found far more information that did benefit me. As described in the DSM-IV, there are clear differences between PDD-NOS, classic autism and Asperger’s.
Of course, there are many reasons why the different forms of autism have disappeared from the DSM with the publication of DSM-V, and there are probably NWO colleagues who can say more about this ;-). Moreover, I definitely would not want to cast doubt on those reasons. Nevertheless, I do think that when people are diagnosed, they need more than just the diagnosis ASS and a treatment advice. That is mainly because it can take a long time before a targeted treatment can start, and this fact neatly brings me to my second point.
The help provided to people who receive a diagnosis can definitely improve. Or, to be more specific: the waiting period until a targeted treatment can start must be reduced. There is often a reason why the diagnosis is established. In my case, it was related to two major life events that occurred in the space of three days. These had such an impact on me that all my internal resources became exhausted. I was quite quickly referred to a psychologist, who eventually referred me for a diagnostic examination. However, there was a significant delay between being referred on the one hand, and undergoing the actual examination on the other. And after the diagnosis has been established, you are once again placed on a waiting list for treatment at a centre for autism. Subsequently, it can take eighteen months to two years before you finally receive the specific care you need. Although you receive help while waiting, that is far more generic in nature than the treatment an autism centre can provide. I think that is a real shame, and there is clearly a lot of room for improvement in this respect. If somebody receives a diagnosis, whether for autism or something else, then I think they should be offered specialised care much faster. I do not know what the current waiting times are, but with all of the cutbacks implemented in the mental healthcare service since I completed my care programme, I would be surprised if the waiting lists have improved much in recent years.
Of course, some things have improved. For example, there was just one employment agency specifically focused on people with autism at the time of my diagnostic process. Now, several such organisations help people with ASS to find work. I found my job at NWO via the regular recruitment process, by the way.’
What would you like to specifically share with your colleagues about this subject/day?
‘I have worked at NWO for slightly more than a year now and experience it as an open and inclusive organisation with respect for people, their ethnicity, way of thinking, et cetera. During my interview procedure, appreciation was expressed for the fact I had stated my diagnosis in my letter of motivation. I valued that. That open and inclusive attitude is one of the reasons why I enjoy working at NWO. This attitude also allows me to talk about my diagnosis more openly and made it less difficult to write this piece.
Despite the inclusiveness that NWO subscribes to, I would still like to encourage everybody during this autism week, insofar as they don’t do so already, to avoid judging somebody immediately if they do something that does not neatly fit the conventional social norms. I know this can be difficult and I admit that I don’t always manage to do so myself. But you should try to understand that somebody might be dealing with something you know nothing about, and that issue could lie at the root of their actions. Simply ask the person about it and, who knows, you might end up having a nice chat. Obviously, the cause could be ascribed to either a work or private setting, and it might be related to autism or something completely different.’
Would you like to know more about Autism Spectrum Disorders? Please visit www.autisme.nl (only available in Dutch).
Text: Seray Ünsal
Diversity & Inclusion at NWO and NWO-I
The section “NWO celebrates…” is published on the NWO intranet Joost and in the newsletter Inside NWO-I. it is an initiative from the NWO-D and NWO-I wide Diversity team. We aim to realise working in an inclusive organisation with inclusive procedures. We believe that we can achieve our strategic ambitions as NWO if we also seek to be a diverse organisation with an inclusive culture. Diversity brings us creativity, innovation, and renewal. In addition to this, we are convinced that we, as NWO, will have more societal impact if our organisation reflects the society we are part of. This means that as an employer, NWO needs to ensure that everybody is welcome, can be themselves and can perform at their best. This Diversity and Inclusion calendar contributes to that. You can read more about diversity and inclusion on the NWO website. And in the January 2021 edition, we published the article “Striving for an organisation where everybody can be themselves” about diversity within NWO and NWO-I.
Section “NWO celebrates …” based on an annual calendar
The section “NWO celebrates …” is based on an annual calendar that we compiled ourselves. You can find our calendar on this page. An annual calendar does not necessarily have to start on 1 January. Various Roman emperors and several popes changed the dates making a year start on 1 March, or 25 March or perhaps 1 January? That set us thinking: which dates do we still take for granted, and how do others view that? Time for a calendar that includes all special days: days that we as NWO employees can celebrate together. We hope this calendar will help us to get to know each other better, increase our knowledge about other festive days, and give us opportunities to open up the conversation and discover which (festive) days are special for us and why.
Would you like to read about the other highlighted (feast)days and/or take a look at the “NWO celebrates...” calendar? Please visit the NWO-I website.