Well, maybe you didn’t ask, but I often meet people who would not be able to answer that question. So, I feel like I need to clarify a few things about ASD and Asperger’s, because some things might not be obvious to everyone.
The thing is, I tend to use Asperger’s and ASD (or Autism Spectrum Disorder) interchangeably and I realise that it might be confusing. So, today I want to explain why I use both.
In many countries Autism and Asperger’s isn’t defined in the way it used to be, because once many people considered Autism to be a rarity and I’ve even heard stories of psychiatrists and psychologists who never expected to come across more than one case of Autism in their life.
Asperger’s was a separate diagnosis, just like there was many other similar diagnoses. In my country many still consider Asperger’s and Autism to be two uniquely different things. I doubt it is the only country to do so.
However, it is generally very common to diagnose Asperger’s and Autism, along with many other diagnoses that used to be separate, under the same name: Autism Spectrum Disorder, or ASD for short. The decision to do this is both practical and logical, at least I think so. All the diagnoses are extremely similar, and often we face very similar challenges in our everyday life, ergo we also require similar forms of support.
I think there are several issues with still diagnosing Autism and Asperger’s (as well as all the other diagnoses that now are are a part of ASD) as different things as it is done in some countries.
The most critical one being that, because of a general tendency to confusion on the subject, those of us who need help have an even harder time receiving it.
Of course, it’s more than that. There are so many misconceptions and so much prejudice, not just from people in general, but from doctors and so-called specialists as well. This makes it more difficult for us on the spectrum to even really understand what we are, and when we don’t know that, it’s pretty difficult to figure out how to survive in the world.
Before I was diagnosed, and before I knew what ASD really was, I had a conversation with my doctor at the time. She didn’t encourage me to get diagnosed and told me, without batting an eye, that if I was lucky, I only had Asperger’s, which was not nearly as bad as having Autism and it would probably not affect my attempt to live a normal life. She also made it sound like being diagnosed with Autism was practically the same as having to live as a hermit in a forest, perhaps with a dog or some other furry creature as my only companion. Needless to say, that made me quite sad and rather worried about my future.
My psychiatrist explained Asperger’s and ASD to me only in a few words, and then she encouraged me to look for articles and networks online to find support for people with ASD. She wanted me to realise that what I was going through was something that many others experienced too, and of course, to find some support in seeing how others on the spectrum dealt with their challenges.
I did, but I was also shocked by the amount of confusion and misunderstanding that sometimes seem to surround the diagnosis ASD. It was difficult for me to find an answer to what I really am, since I feel like no one can agree on anything related to ASD. I realised then how important it is to look into myself and figure it out that way, not just listening to what others tell me I am. Now, I still read what I can about ASD and Asperger’s, but I always consider whether or not something applies to me.
I no longer try to figure out what I am. I want to know who I am.
I want to make it perfectly clear that having Asperger’s does not mean that I am stupid or in any way less than other humans. My ability to express emotions might be like that of a 5-year-old child, but that does not mean I should be treated as such. I have met people who believe that, just like I have met people who believe quite the opposite and expect me to know everything there is to know about anything they ask.
But most people believe that because we are called high functioning it also means that we function perfectly well within society, like my previous doctor even believed. High functioning means nothing like that, and yes, I know that there are types of ASD where it can be challenging in very different ways. This, however, should not mean that those of us who are high functioning should be neglected. We need help and support, not just as children, but sometimes most of our lives. I’ve talked about this before, but it is so important!
The diagnosis ASD shows Asperger’s is not a separate diagnosis, but more like something that specifies where on the spectrum someone approximately is. Like Infantile Autism, which is in a different place on the spectrum. ASD is the general name and the other diagnoses are more specifications rather than an actual different diagnoses.
What often complicates matters more, is that even though every single one of us on the spectrum have similar issues and challenges no two cases are the same. If you have ever met someone on the spectrum, it could of course help you next time you meet one of us. But, it could also make it a lot harder for you, if you make the mistake of treating us all the same.
Isn’t it like this with neurotypicals? If you meet one person, you wouldn’t expect the next person you meet to be the same, would you? ASD is just like that, you can’t expect everyone to be the same.
In a way, it’s just like with food. You can make many different dishes with the same basic ingredients, but it will taste and look very different depending on what recipe you use. ASD is like we are all made with the same ingredients, but every single person is a different recipe. Some of the recipes may be similar and have a similar flavour, smell or look. Other recipes may be very different from each other and look nothing alike – almost making you believe they were not made with the same ingredients, even if they are. Asperger’s, in this case, would be like all our recipes have a similar flavour to it.
I use the two terms Asperger’s and ASD interchangeably depending on whether I feel a need to specify where I am on the spectrum (my particular flavour, you could say) or not, and that’s is all there is to it. When I talk about ‘being on the spectrum’, I am referring to the spectrum in Autism Spectrum Disorder. I have heard some with Asperger’s referring to themselves as an Aspie, but while I have nothing against it, I prefer not to use it myself.
The support for those of us on the spectrum is, in my opinion, appalling and I hope that it will change in the future. I have no idea how to change this, but I hope that if we talk more openly and freely about ASD, then at least all the misunderstandings can be cleared away. Once that happens, maybe we can find a way of figuring these things out and getting more used to the idea of neurodiversity.
It seems, again this is my personal experience, that the go-to solution for people like me is to either pressure us into early retirement and/or pump us full of medication to keep us docile and quiet. I know this is quite harsh, and I am very aware that medication can be necessary and a great help.
I myself was medicated for years, but to me it is not a great solution. It may have kept me alive, but my suffering did not change. I am not against medication, and should I need it again, I would take it to survive. Only, I hope it will never be the case again, because to me it was surviving and not living.
I believe it is a disgrace how we are all hidden away like deformed creatures of the night. We have challenges that need to be considered, of course, but we are capable of working. Some of us are capable of living on our own, but we might need support and help to take the first couple of steps. And then again, some of us may need more constant support, but that does not mean we do not want to be able to work and live on our own.
What happens to those of us who cannot live on our own when our parents pass away? Who will help those of us who are alone?
I live at home with my mother now, but I have lived alone before. Some things were a struggle, but I can live on my own and I plan to do so one day. The main problem for me is finding employment and then keeping the job once I get it. It is extremely hard and because of it, my financial situation does not permit me to even consider living alone.
My anxiety has been quite extreme since my burnout, and so I hardly leave the house, which also makes it difficult to live alone or find a job. I know there are many like me; people who dream of living on their own and working, having friends and maybe a relationship – perhaps even to have a family of our own one day. The problem is it feels more like a dream than reality.
Families, parents and partners to those on the spectrum can get support rather easily it seems, but what about us?
There are no statistics on ASD from my country, but abroad the numbers all look similar. It’s common to see that people with ASD unemployed, and those who are employed tend to be overqualified for whatever job they are doing. Most of us are single and unmarried.
It’s not to say we have no interest in such matters. Not at all. I can’t speak for all of us, but to the best of my knowledge most of us want to work, if we can. We desire true connection and friendship, like everyone else. We just don’t always know how to achieve it. I am not even sure I understand what it means to connect with another human being. Nonetheless, I feel loneliness too.
Once a child on the spectrum turns 18, it seems that there’s practically no help to get anywhere. This makes no sense whatsoever to me. It is exactly at this age we need to learn how to live in the world as adults.
Growing up can be difficult even when you are neurotypical kid who can read social cues and signs, but imagine being a teenager unable to do so. None of those challenges disappear magically at the age of 18. In fact, quite the opposite.
As adults we need help to find a job, we need support in maintaining those jobs and in general we need support and help to live the life we want – the type of life that many neurotypicals take for granted. Sometimes, however, I fear that what we need the most is acceptance.
