Earlier today, I shared my blog post about the condition of selective mutism, which I have been diagnosed with. And as the disclaimer reads, it was proofread by a licensed psychologist. However, after publishing, I did get reached out to by a clinical psychologist about the lack of something that should have been noted in the post. What I share here counts as an addition and a link will be provided in my main posts as soon as I am done publishing this.
However, for now, let me tell you that the reason the psychologist reached out is a common misunderstanding involving selective mutism, autism, and the majority of mental health disorders.
In 2018, research (Steffenburg et al.) was done among 97 people between the ages of 4 and 18 with selective mutism to study the potential prevalence of autism among people with selective mutism. This research found that 61 of the individuals could be regarded as autistic.
28 with classic autism, 29 with atypical autism/PDD-NOS, and 4 with Asperger’s syndrome. A further 19 had autistic features that were “subclinical” (not severe enough to present definite or readily observable symptoms), but still enough to impact their lives. And only 17 had no autistic features whatsoever.
16 of all studied classified as being intellectually disabled, being far more common among those with autistic features, 15 compared to 1.
Of those studied, 5 people manifested muteness at home as well, confirming what I already stated in my main post. And 4 of these belong to the group as being possible to be recognized as autistic. They were described as extremely shy and avoiding contact with others, alternatively not talking to a specific member of the family. It did show a higher number of females, but I will come back to this momentarily.
The research is of Swedish origin. And as the article released about this research confirms, the numbers are very different compared to 2 other studies, done in the USA and Denmark. These studies found only less than 10% of those they studied with selective mutism to be possibly autistic. This extreme difference is very notable, although explained by the Swedish article. To quote:
We would argue that our findings are important in that they point to the need toward always looking out for symptoms of autism in cases with SM, and to consider the possibility that the “symptom” of SM might not be extremely rare in autism.
Steffenburg et al. (2018) – Dove Medical Press Limited
It has been suggested that the anxiety experienced by children with SM makes them refuse speech because they are “frozen with fear”. Our study group with SM+ASD was more often described as demonstrating lack of social skills/social interest, and that refusal to speak reflected a stubborn refusal rather than shyness. There might be subgroups within the SM patient group and those who were assessed at our clinic are particularly the subgroup with SM and a comorbid ASD.
It is probably important for the group of individuals who meet the criteria for both SM and ASD that both diagnoses be considered.
Interestingly, what they note is the exact reason why there are so many opposed to allowing the diagnoses of selective mutism and autism at the same time, myself included. What I would personally conclude from their findings is that in Sweden, there’s a rather high amount of people who are supposed to have the diagnosis of autism spectrum disorder that instead get recognized as having selective mutism.
As said before, the study found a higher prevalence rate of selective mutism among girls, with 71 girls in the study and only 26 boys. With their data not matching up to either other studies or the actual definition of selective mutism, it causes a lot of doubts about the diagnostic capabilities of psychologists in Sweden. But also about whether we understand the differences in social behaviors of males and females, seeing as females are generally expected to be more social and therefore any social or communication deficit is generally more apparent.
As stated before on this blog in the post “A Look Into My Life: Autism Spectrum Disorder”, the diagnosis of autism is often made at too early of age and without enough observation. This seems to be a problem in this case of selective mutism diagnoses as well. The reality is that selective mutism and autism are notably different, not only by the additional symptoms autism has but also by the fact of the different behavior people with selective mutism show.
Selective mutism is an anxiety disorder and there needs to be an origin of fear for the lacking speech for this diagnosis to be made. However, the study clearly states that this hasn’t been the case. Furthermore, the behavior the study states, which is a refusal to speak out of stubbornness, is something that always has been very notable about autism, regardless of it not officially being regarded as a symptom. It’s something that was already noted by the first person to ever officially describe autism, the Kyiv-born Jewish child psychiatrist Grunya Sukhareva. By her description, autistic children were “pathological avoidant”.
However, her description of autism also included one other trait that is too often looked past, which is psychopathy, also known as sociopathy. This would include the following characterizations: persistent antisocial behavior, impaired empathy and remorse, and bold, disinhibited, and egotistical traits.
As stated before, impaired empathy when it comes to autism is a difficult one. However, I am not someone to deny that the other 3 aspects are the case for autistic people. The first is literally what the study refers to.
And the impaired sense of remorse is undeniably common among autistic people, although not always due to not having remorse. It’s the difficult part of empathy that plays a part here, as there are quite a lot of autistic people that simply are unable to understand what they did do wrong when they did something wrong.
Furthermore, the bold and disinhibited traits are something even many autistic people themselves confirm to be true for autism, although there is a problem with the differential diagnosis of autism known as disinhibited social engagement disorder when it comes to this. This is a condition that previously was a subtype of the already mentioned reactive attachment disorder, a condition that is very often misdiagnosed as autism.
As for the egotistical side of things, I would prefer to just note the fact of high-functioning autism. There’s no denying that even today there’s a need for the different presentations of what is regarded as autism spectrum disorder to be defined in independent ways. However, this whole diagnosis was about the superiority in IQ some autistic people had compared to the severe cases of autism. And it’s very important to note the fact that a high IQ doesn’t in any way mean you are better, nor even smarter. Some of the smartest people have intellectual disabilities. And the fact that IQ isn’t a true statement of intelligence has been spoken out numerous times. That being said, there have been so many times autistic people who fit this category that has been bragging about it, that the egotistical side of autism is simply undeniable. Besides, there’s the easy example of “autistic” and “with autism” that shows an incorrect sense of ego. There’s no important difference between these, but if I would use the second one, I will have hundreds of people attacking me, even though I am autistic and am just using words. And, yes, I’m generally not supportive of the pronoun discussion either, as it’s far more important that you know someone is talking to you. Not everything has to be a fight. However, the biggest cause of fights is… You should get my point here.
The usage of diagnoses instead of symptoms is to make it easier for support to people with certain difficulties to be given. However, the reality of the high prevalence rate of misdiagnoses shows this system doesn’t work. A major problem of autism spectrum disorder and selective mutism diagnoses is that they are very close to each other. However, this is the case for autism spectrum disorder and numerous other diagnoses as well. The defining part of autism is the behavioral aspect, not the social and communication aspects. Like how autism is fundamentally different from selective mutism due to autistic people choosing to not speak. Or how OCD differs from ASD by those with OCD being ashamed or embarrassed by their actions, which is not the case for autistic people. And this last one causes a problem with what I said before, the empathy part of autism being difficult. The reality is, autistic people are supposed to be impaired when it comes to empathy, as my post about autism even literally states that it is part of the A criterion which applies to all people with an autism spectrum diagnosis.
And this links to something else I have shared in the related blog post series before as well, which can be found in the post “A Look Into My (Family’s) Life: Neurological Genetic Conditions“, the fact that having a neurogenetic disorder often includes what we call autism, regardless of there being notable differences. As in the post about autism spectrum disorder that I shared, I made a notable mistake. This mistake is giving no attention whatsoever to the fact that both Aleks and Anton have an autism diagnosis as part of their neurogenetic conditions. It’s not pure autism. And more than this, it’s doubtful that I truly know anyone with pure autism, to begin with. As I’m also diagnosed with selective mutism, our blog’s webmaster and my eldest son are both undergoing genetic research, and I don’t know enough about any of my autistic friends whether they have been checked for any neurogenetic condition.
My beliefs surrounding empathy among autistic people came from them. It’s officially fundamentally wrong. And I will undeniably revise my blog post in the future about this. But it is caused by the fact that we call the autistiform behavior among those with neurogenetic disorders also an autism spectrum disorder. There’s a need for this to change if we want to be factual about both sides of the coin.
So… With that all being said, you might wonder: what’s the misconception I noted at the start of the blog post? The answer is that the misconception is whether we truly know enough about any condition to make statements about facts. The study’s quote could be regarded as wrong since the children with a possible combination of selective mutism and autism spectrum disorder don’t show the behavior expected of selective mutism, which is the case by how we currently define things. But there’s a whole different way to look at it, which is the possibility that we are talking about a different condition than what we know as either selective mutism or autism spectrum disorder entirely.
For years already, there have been complaints about exactly this problem. We generally talk about stereotypes when it comes to mental health conditions, far less about the facts. And this is in part caused by the American Psychological Association (APA) and their DSM. Even today, the World Health Organization and their ICD don’t explain conditions the same as the DSM. Selective mutism is one of the notable examples. In general, it’s very questionable why an American organization maintains an international framework like the DSM. Internationalizing the DSM and making the APA only 1 participant would possibly remedy many of the problems when it comes to mental health conditions and the diagnosing process. Especially as culture is known to impact both of these. To be candid, my works are generally proofread by an Australian psychologist. If I would have let it be done by an American, I probably would have had completely different posts, with possibly far fewer mistakes. But at the same time, they would no longer fully reflect the way we generally look at it here in Europe and among the countries of Oceania.
Regardless, yeah, some things could be regarded as mistakes, or possibly missing from my posts. But the reason I write them is exactly for the reason why I receive responses in private. Psychologists should notice in their hearts the duty to not just diagnose and support people, but also educate and question their information and practices. The lacking information on mental health conditions is a huge problem in the support system psychologists should be providing. And while I did study psychology myself as a minor study, I don’t have the sources, nor knowledge, to precisely tell everything in detail. The stigma and hate surrounding mental health conditions shouldn’t exist, and yet it does. The fact I will be criticized for openly noting the accepted facts is something I am prepared to face. I just wish others did so more as well…
