Why I avoid writing about autism while being autistic
It’s weird to tell you this, but since the start of my blog I’ve been scared of 1 single subject, which is autism. Yes, I’m an autistic blogger and am scared to literally tell about my own experiences, which is also the reason why most blog posts I dared to share before eventually got hidden behind passwords. The reason for this is rather simple, even when I tell about my own experiences, I get attacked because others don’t feel the same way. And worse that just this, there are so-called “specialists”, healthcare workers who go around attacking autistic people for telling about their own experiences because they are somehow incorrect… How is that even possible? Well, that’s just the thing, the specialists have their own narrow-minded vision which you are not allowed to go beyond, regardless of the fact that the true specialists about autism are autistic people themselves.
One of the most obvious examples are the latest 2 editions of the DSM, DSM-4 and DSM-5. As I was younger, I got diagnosed by the DSM-4 standards and first got labeled with the condition of PDD-NOS, which eventually got rediagnosed to Kanner’s syndrome, also commonly known as classic autism or just autism. In DSM-5, the move towards the terminology of autism spectrum disorder was made and my condition is now called, and I will quote, “a disorder within the autism spectrum”.
Now, for quite some healthcare workers this was a success, no longer the confusing conditions of Asperger’s and Heller’s, with the latter being an important part to a lot of disproven autism conspiracy theories. But for the society, and especially autistic people like myself, this was a huge step back in time. The reality being that when people thought of autism, they thought of Asperger’s or people with severe forms of Kanner’s syndrome. And now? They often do exactly the same. So, what is the difference you might ask. The difference is that I can no longer counter people by explaining what Asperger’s syndrome and Kanner’s syndrome are, and people understand even less what a “spectrum disorder” is than the former 2 terms.
Some time ago my son Vladislav got into an argument with a friend here on the internet. I don’t exactly know what it was about, but it eventually led to him needing to explain what his condition meant. Under the DSM-4 classification, he has Heller’s syndrome. After he had explained it with lots of personal details, he got a response from his friend. The response was shocking and led to Vladislav getting emotionally hurt. The friend didn’t believe he was actually autistic because what Vladislav had explained didn’t fit the description the friend had looked up at some website.
When an adult man hurts a child, there is undeniably people who are concerned, which is why another friend stepped in. As she explained, she had a younger sister with also a form of autism, Kanner’s syndrome by DSM-4 classification. She took over 4 hours just to explain to the first friend that Vladislav wasn’t lying and that the definition he had found wasn’t about Heller’s syndrome, but about Asperger’s. Yes, I’m not joking here, over 4 hours!
Now you might ask why the guy found the definition of Asperger’s while looking up Heller’s syndrome. Well, that’s just the thing about the current situation with DSM-5, Vladislav correctly told that he has an autism spectrum disorder, not that he has Heller’s syndrome. The reality being, if Vladislav would have told he has Heller’s syndrome, nothing of what happened to him would be able to happen. By which I don’t mean that the person would necessarily have understood Vladislav’s condition correctly, seeing as most articles about Heller’s syndrome are all about the part which have an intellectual disability, which he doesn’t have. But at least it would have been closer and the person would have seen the many common parts. It’s also the problem related to Asperger’s. As like people connect Heller’s with intellectual disability, people supposed everyone with Asperger’s had high IQ. Neither true, and an often noted reason for moving towards the singular name of autism spectrum disorders.
By which I don’t mean to say I do know a valid solution to the stereotypical way people look at the different forms of autism defined by DSM-4. After all, names such as the British idea of “high-functioning autism” would cause the exact same discrimination as the DSM-4 terminology was causing by people stereotyping the conditions. But that’s probably also the exact problem at the whole discussion to begin with, as what have intellectual abilities to do with the autism disorders? The autism disorders are primarily about communication and social interaction, with the addition of the obsessive tendencies being more notable among those with the former Asperger’s diagnosis. And trust me, having many Aspies as friends, I can confirm that this is very typical to the Asperger’s diagnosis. If you have ever asked the DSM-4 diagnosis of autistic people writing blogs fully focused on the autism disorders, they will somehow (almost) always be Aspies. Being an autistic person with the DSM-4 diagnosis of Kanner’s syndrome, I have to admit I respect their ability to do this, as my blog would be a lot better if I was able to do this. I wouldn’t be surprised if people sometimes wondered if I have ADHD by my complete lack of focus while writing my blog posts. It’s why many of my blog posts seem like they are written over several days because I got distracted and returned to writing later, as that’s exactly what happens.
Anyhow, the next reason why I get attacked and dislike writing about autism has to do with so-called “self-diagnosed autistic people”. Yes, there are people who say they believe they are autistic and therefore are autistic. Personally, I don’t believe in self-diagnosing. Sorry, but that’s how I feel. And, yes, I am someone who has been diagnosed by a professional. At the age of 7 in Dresden, Germany. I have been rediagnosed several times in other locations, but the autism diagnosis has always been there.
The reason why I do not support self-diagnosing has to do with people who are not autistic who claim to be autistic. And don’t get me wrong, I’m not saying there aren’t people who correctly state they are autistic without an official diagnosis. I’m not even saying all official diagnoses are correct, which is something I will say more about later in this post. What I am saying is that a self-diagnosis isn’t enough to be able to call yourself autistic. Especially as I have had several friends who did believe in self-diagnosing who eventually turned out to not be autistic. And when I am completely honest, I did know before they got the official results. It’s like how a friend who practiced self harm eventually got diagnosed with schizophrenia.
Which may seem weird to some, but self harm is often incorrectly stated to be part of autism by the inability to understand that headbanging and similar tendencies aren’t self harm, they are part of the seizures many autistic people experience, as confirmed by numerous researches. In fact, over 35% of autistic people have seizures. And as the American Epilepsy Foundation states, “approximately a third of the autistic spectrum also have epilepsy”. And it’s not hard to believe there is a link between autism and epilepsy, which is the third condition which is highly common among those experiencing either of these conditions, which is sleeping disorders. As the somnologist treating my sleeping disorder told me, over 70% of autistic people have a sleeping disorder. Which I have no problem believing, knowing the sleeping disorders of myself, my 2 autistics sons and most of my autistic friends. However, also over 70% of people with epilepsy are known for having a sleeping disorder. Maybe someday research will explain this…
And this is probably a good time for me to get back to my statement about official diagnoses. The reason why I said they aren’t always correct is that they simply aren’t. It’s like how I first got diagnosed with PDD-NOS, but eventually got the diagnosis of Kanner’s syndrome. Or more notable is a friend of mine who got diagnosed with PDD-NOS at the age of 11, got rediagnosed with Kanner’s syndrome when he was 15, and eventually got the diagnosis of Heller’s syndrome when he was 28 years old. Yes, we are talking about 17 years until he got the correct diagnosis. And that’s even after he shared many personal things I wouldn’t want to think about sharing with a psychologist, nor even would have available myself, which included several videos of him throughout several moments of his childhood (including as baby), where the psychologist was able to verify the regression my friend made. And it’s not just related to autism at which he experienced this, as he also has a sleeping disorder. He has had several diagnoses and a huge list of medication and treatments until he eventually got diagnosed with “Circadian sleep-wake disorder NOS” without any possible treatment possibilities. The national expertise center at epilepsy, sleep and wake disorders, neurological learning and development disorders (the country I won’t share due to privacy concerns) where he eventually got diagnosed actually even openly criticized the psychologists inability to give him the diagnosis of Heller’s syndrome, as according to them this would have helped with the diagnosis and treatment of his disorderS. As it wasn’t just the sleeping disorder he eventually got diagnosed with, as the other condition he got diagnosed with is a form of epilepsy. As previously said, about 35% of autistic people have epilepsy, but those with specifically Heller’s syndrome are far more common to have epilepsy compared to those with other forms of autism. In fact, we are talking about an average which is supposed to be around 75%. And I say supposed because Heller’s syndrome is a rare condition which makes it hard to give a concrete estimate. Although, it does have to be noted that the number of people with Heller’s syndrome is supposed to be far higher, but are misdiagnosed with Kanner’s syndrome. Another reason why the move towards 1 definition is a bad thing, as there is evidence they are not 1 condition but several.
However, there is 1 more reason why I got attacked which is actually far worse than anything before, which is that I say I am not disabled. Let me repeat that another time, I am not disabled. That’s just the thing, I specifically talk about myself, not about the conditions I have. As let’s be real here, for both of my sons their form(s) of autism are a disability. I am a strong supporter of the Polish State Fund for Rehabilitation of Disabled People(PFRON) because I know that there are many people who are factually disabled. I know a lot of conditions can be disabilities for some while they are not for others. And in my case, I don’t see the way I experience my autism and other conditions as disabilities as I am able to live the life I want without restrictions coming from specifically my conditions. And again, please take note of what I exactly said. As among the reasons I moved to Poland is undeniably the many restrictions I faced in Ukraine related to my conditions. However, at least from my vision this has not to do with my conditions but the local laws. Take adoption in Ukraine as an example, autism is among the reasons to be banned from adopting in Ukraine. The thing is, this restriction doesn’t originate from the autism, it originates from the laws of Ukraine. And even beyond that, the lacking understanding of governmental people of the conditions they name as being reasons to be banned from adopting. Honestly, if you ever have the chance to check out the whole list of medical conditions which cause you to banned from adopting in Ukraine, do so. You would be surprised by how many conditions there are on the list which are unable to be explained about why they cause the restriction on adopting. In fact, if you fight the Ministry of Social Policy of Ukraine over the ability to adopt while having quite some of these conditions, including autism, you are likely to win and be granted the ability to adopt, as I did too. It’s a bit off topic to state this here, but Ukraine really needs an overhaul of laws.
Anyhow, if I would need to sum up my problems while writing about autism, it’s how too many people are narrow-minded, too focused upon their own experiences and opinions, and don’t take the effort to read what is exactly written. Undeniably I would prefer a move back to the definitions of DSM-4, but at the same time I can’t deny that there is also an important lesson in the DSM-5 definition which far too many don’t notice well enough and lead to the overall problem about the subject. The autism disorders are a spectrum and every person experiences it in different ways. Just because one person has a severe form of the autism disorders and someone else has a mild form, doesn’t mean that either one of them is more or less worthy. It’s how I love both of my sons equally while one has a severe form and the other has a mild form. Yes, they are different, but at the same they are both also so incredibly amazing. Their smiles always brighten my day, even after either one has had a meltdown. As mild doesn’t mean that there are no problems, nor does severe mean that it is always difficult. And what we truly need when it comes to autism is more acceptance and less discussions. Let people be who they are and accept them for it. And instead of focusing what is best for healthcare workers or society, focus on what is best for autistic people themselves. After all, that’s the people who we are talking about…