Note: An addition to this post is shared here: https://snowcalmth.com/selective-mutism-and-autism/
In the last post by my son Vlad, you could read a bit about autism spectrum disorder already. As he told, a lot of people tend to think of the obsessive behavior when it comes to it. Similarly, there is a lot of attention to the need of sameness many autistic children and adults require. But there’s less attention for the other parts of the B criterion of the DSM-5. Let alone how these visions are often stereotypical, unjust, untrue and a problem for those on the spectrum.
Autism Spectrum Disorder Diagnosis
For those who are not aware, the A criterion of the DSM-5’s autism spectrum disorder diagnosis requires all 3 aspects to be there. This would be (1) deficits in social-emotional reciprocity, (2) deficits in nonverbal communicative behaviors used for social interaction, and (3) deficits in developing, maintaining and understanding relationships. These 3 aspects are what all of those on the spectrum are supposed to have. Missing 1, 2 or even all of these 3 and you’re not actually autistic by today’s standards. And for clarity, yes, there are many on the spectrum that shouldn’t be. It’s both well-known and a major problem.
When looking at the B criterion of the DSM-5’s autism spectrum disorder diagnosis, there are 4 criteria, of which you need to have at least 2 to be on the spectrum.
The first is “stereotyped or repetitive movements, use of objects or speech”. As Vlad told in his post, one of the aspects of his autism diagnosis is idiosyncratic speech. What this means is that he uses normal words or phrases in an unusual way. Think about using words in a way that doesn’t reflect their meaning, or adding a name to a phrase due to a connection made in their minds. It’s something I have to deal with as well, and it’s part of this first B criterion of the autism spectrum disorder. In fact, this is one of the dividing criterion between the subtypes of classic autism and Asperger’s, as this first criterion usually doesn’t apply to those with the subtype of Asperger’s.
The second is “insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior”. This is what you stereotypically see in most media about autism. The distress over small changes, the rigid thinking patterns, the need to do everything always the same. Even though many suppose all autistic children and adults have this, it’s actually not the case.
The third is “highly restricted, fixated interests that are abnormal in intensity or focus”. This is the criterion that many will known as just obsessive behavior. It’s actually another dividing factor between classic autism and Asperger’s, with this being highly common among Aspergians, while being uncommon among those with the subtypes of classic autism and childhood disintegrative disorder. It undeniably shows a link to OCD.
And the fourth is “hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment”. This is commonly also called “sensory processing disorder”, although this name is not recognized by the DSM-5. This is the criterion that is generally more outspoken among those with the subtype of childhood disintegrative disorder. It’s also more severely seen among my autistic sons.
Which would be all… Right? Well, no.
Next up criterion C, which is that symptoms must be present in the early developmental period. And this is where many get confused.
In social science and psychology, a life begins with being a newborn, followed by infancy, which actually takes up to 3 years of age. Sometimes it’s called “infancy and toddlerhood”, as you’re factually a toddler between the ages of 1 and 3, not an infant.
The step after this, which is from the age of 3 through 5, is known as early childhood.
It is followed by middle childhood from the age 6 through 11. And from 12 to adulthood is known as adolescence.
Now what “early developmental period” means isn’t defined in the DSM-5, nor in any other medical source. People generally assume it’s anywhere up to the age of 8. However, there’s controversy about what the starting point is. Some say birth. However, studies and some psychologists say from the age of 3, seeing as a brain research indicates that from birth to the age three are the most important years in a child’s brain development.
Now let’s take a moment to note that the age of 3 means that you’re over 36 months old. This may seem to be meaningless information until you realize that quite some children are already diagnosed at the age of 18 months old. Yes, half of the time and actually before the C criterion even starts to apply according to quite some psychologists, at least based on the way it’s written in the current version of the DSM. And scientists, researchers and psychologists have long been stating that autism is both over-diagnosed and the criteria has become diluted. Which based on many children being diagnosed too early, this isn’t really a surprising thing to state. Diagnosing doesn’t have to take days, weeks or even months, but it could take years when it comes to autism. There are many specialists that even claim the autism diagnosis should happen after the age of 5, as a child is simply not developed enough before that to make conclusive decisions. Before that, they should be observed, not labelled. A misdiagnosis will only lead to improper treatment of your child, which no good parent should want.
Misdiagnosis: ASD vs SCD
For those who don’t know what a misdiagnosis could do, I would like to give some attention to my daughter Kasia. She used to be diagnosed with autism spectrum disorder. However, as could be read in one of my previous posts, this was a misdiagnosis. Today she’s diagnosed with social (pragmatic) communication disorder. This is a diagnosis that was introduced in the DSM-5 for those who have, in the most basic way of explaining, communication problems without the typical autistic behavior. That being said, social (pragmatic) communication disorder is actually far more different than autism spectrum disorder than many suppose. The socio-communicative problems experienced by Kasia are actually far more severe than I see with her autistic brothers. We could be talking, which she usually does very passionately but with many delays mid-speech, and then suddenly she changes the subject, and again, and again, and again. In the end, I have no idea what we were even talking about, and neither does she. In comparison, the conversations with her autistic brothers are slower, very topic-orientated and they find it very difficult to even go off-topic. As for our son without any diagnosis, he talks about anything and everything while remembering exactly where he left off before he went off-topic. It’s usually a short explanation he goes off-topic for.
Another specific problem only Kasia experiences is the inability to keep listening to someone else talking for a longer time. It becomes too much information to her and she interrupts whoever she is trying to talk with.
Which isn’t even the greatest problem. As the greatest problem is in the autism spectrum diagnosis’ B criteria, as explained just moments ago. The previous belief that she had problems that she didn’t have actually caused emotional distress for her and she remains emotionally scarred up until today. She often tells how glad she is to have been adopted and no longer having to deal with misjudgments. As it caused her to feel so depressed, which she was unable to out to others, hence it was eating her up from the inside. The proper diagnosis has not only helped her to get the right treatment, it has also made her able to accept herself for how she is.
Continuation of autism spectrum disorder diagnosis
Anyhow, there’s also still criteria D and E. The first is that the symptoms have to cause clinically significant impairment in social, occupational or other important areas of the current functioning. And the last is that the symptoms shouldn’t be better explained by either an intellectual disability or global developmental delay. Looking back at criterion C, that’s also an important reason why an autism diagnosis should not be made at such early ages.
Which is still not where the official criteria of an autism spectrum disorder diagnosis truly end. As there’s one important thing to state left, and that’s the need to specify if there is or isn’t the following things:
- An intellectual impairment
- A language impairment
- Catatonia
- An association with a known medical or genetic condition or environmental factor
- An association with another neurodevelopmental, mental, or behavioral condition
They’re not the same, it’s a spectrum
As the criteria for an autism spectrum disorder diagnosis show, there are many shapes and forms autism can show in. And this has long been divided in mild and severe. It’s like the subtype of Asperger’s has always been classified as mild, while the subtypes of childhood disintegrative disorder and classic autism have always been classified as severe. And let me be clear, a lot of this has to do with stereotypes. It’s like I have met Aspergians who are dealing with way more severe problems than I do as someone diagnosed with the subtype of classic autism, or even my children with the subtype of childhood disintegrative disorder, while we’re all supposed to have severe forms. Actually, I even see huge differences between my children on a daily basis.
Take my middle son Anton as an example, he’s not truly non-verbal, but neither actually verbal. He talks rarely. And he’s actually one of the children where you can see his autism rather easily. He does a lot of what is known as stimming, self-stimulatory behavior, which is repetitive or unusual body movements or noises. Yep, the first one of the B criteria for an ASD diagnosis. Specifically, he hand-flaps, he rocks back and forth while sitting, holds his hands stiffly open while walking, he chews on and mouths objects and listens to the same song over and over again. He does this mostly among new situations and people, which is why people generally know instantly while meeting him that he’s autistic. And while this might seem like a bad thing, it usually isn’t. For him, the stimming helps him get calm and deal with the stress/anxiety he experiences during what is new to him. And for others, it’s easier to understand him because they can see he’s having problems. As for being less verbal, this isn’t a huge problem as long as people don’t expect him to talk. Some girls apparently even love a boy that doesn’t talk constantly, as he has been in a relationship for several months already, while still going steady.
Compared to him, my other middle son Aleks is overly verbal and basically the exact opposite, which is hardly surprising with his co-morbid ADHD. And although you might suppose this would clash with Anton, it actually almost never does. Anton and Aleks both love to hug a lot, in which they always find each other. And Anton does have his ways to make clear to Aleks he is too hyperactive at times. Like one of the things Anton does is dropping his chewy on the ground. Aleks usually speeds across the room to pick it up and give it to Anton, while realizing at that moment why Anton did it. He always politely apologizes for his hyperactivity and tries to calm down, not always successfully. The very few times it did clash, Aleks always ends up crying uncontrollably and feeling incredibly guilty, the typical autism meltdown.
Autism Meltdowns
While the autism meltdowns are rare with Aleks and Anton, they are really common for my eldest son, Vlad. For those who are not aware, an autism meltdown is an intense response to an overwhelming situation, like being overstimulated with too much information or a sensory overload. During a meltdown, there’s a temporary loss of control over behavior and emotions. This could be expressed in a verbal way (like by crying, shouting or screaming,) physical (like kicking, punching or biting,) or even in both ways. It does have to be noted that this is not the same as a temper tantrum, it’s not bad or naughty behavior. If you ever experience an autistic child or adult having a meltdown, it’s best to let them recover from their overload and afterwards ask them calmly if they are okay. Also don’t stare or keep talking to the autistic person, as this could make it worse. This feels a lot worse for the autistic person than it will feel for you, which I can say from having been on both sides of the situations. Yes, I have had meltdowns myself as well. Being an autistic parent does actually make it easier to help your autistic child, or at least it’s the case for me.
In case of Vlad, there’s actually one time he had a meltdown, became really angry at me and didn’t want to talk to me. When I checked up on him about 30 minutes later, he was laying on his bed sleeping with Aleks sitting beside the bed on a chair. After Vlad had gone to his room, Aleks had gone to ask his older brother if he was okay and had successfully calmed him down. As it turned out, the meltdown was due to sleep deprivation. It’s a good example of the myth of autistic people having less empathy being not true.
The Empathy Myth
There are some clear differences between my children and their experiences with their forms of autism spectrum disorder. However, one of the things that I’ve always loved most about my children is their high amount of empathy. Which is in a way interesting. As I said, there’s a myth that autistic people have less empathy. However, from experience, I would think the opposite is true.
The reason why many people believe that autistic people have less empathy is due to the belief of autistic people being unable to recognize other people’s feelings, understand other’s hopes, dreams and expectations, emotionally relate to another’s feelings, have the tools to physically and verbally express empathic feelings, and express empathy in a way that is expected or desired by cultural understanding.
Now, there’s no denying, most autistic people do lack the tools to physically and verbally express empathic feelings. It’s literally the A criteria of autism. However, expressing and actually having less empathy are 2 different things. If you actually have ever been with certain autistic people over a long amount of time, you will notice that they will be the first to actually notice your emotions and be able to imagine what you might be thinking or feeling. The problem of autistic people is that generally one of 2 things happens. The first is misjudging the emotions differently than intended, like seeing sadness as anger. And the second is being unable to handle them in the way people expect us to. The great mistake people make themselves is saying that this means that autistic people have less empathy, which is not true. It is similar to the condition known as alexithymia, which is characterized by being unable to identify and describe your own emotions. Just because you can’t identify your own emotions, doesn’t mean you don’t have these emotions. Similarly, just because you misjudge and are unable to handle someone else’s emotions, doesn’t mean that you can’t put yourself in the shoes of others, and understand and share the feelings of another. As that is what empathy means, the ability to understand and share the feelings of another. Empathy does NOT mean that you can correctly identify and handle them of others. And I know people will go shout “semantics!” at me, but it’s a really important distinction to make. Although the reason why people don’t do so is also kind of obvious, as the attempts to make autistic people seem less than “normal people”(neurotypicals) has been ongoing for years already, even by autistic people themselves.
Sensory processing problems
To go back to my own and my family’s experiences with autism, there’s actually the very notable sensory problems. A great explanation about this can already be found on Vlad’s post. However, I do want to say some more about this than he already did. Apart from the fact that he wrote hypo instead of hyper by accident. The truth is that both Aleks and Vlad are overly sensitive to touch due to their sensory problems as part of their autism. What people don’t understand is how impactful this truly is.
Take for example the need of specialized clothing. We don’t go to regular clothes stores, as the majority of clothing have seams, stitches, labels and more that bother them. It causes them to rather be unclothed even. Hence why we actually have most of their clothing made locally on order to be able to be worn without causing sensory problems. Also, admittingly, because the prices online are way higher than people are asking for to make clothing fully customized. And it’s not just clothes, there are also apparel like pillow cases that can cause sensory problems. Although, looking at clothing, I highly doubt many are even aware of the most problematic when it comes to sensory problems… As it’s underwear. When you can’t wear those due to your sensory problems, it should say enough. And the worst part of it is that there’s no reason why it should be like this, as making seamless clothing is apparently even less work and cheaper in material according to our clothier. It doesn’t make sense at all.
Regardless, even having sensory clothing is not always enough. Take for example when it has rain, instantly our autistic sons want to undress. They hate having wet clothes on. And that’s why we have the rule that they have to wear at least underwear at home and be fully clothed outside. This may sound weird to some, but that’s the life with the sensory problems of autism. Besides, even our non-autistic children experience the same problems, just in lesser ways. When our newest addition to our family, our now youngest son instead of Aleks, tried out sensory clothing, he loved it and has not went back to regular clothing.
Actually, in case of Anton, who does have sensory problems too, he actually has weighted items, including clothing and blankets. Which is something a lot of “normal people” (neurotypicals) love too.
Being a parent while on the autism spectrum
Also, there’s the elephant in the room, me being an autistic parent. There’s the belief that autists can’t be good parents. And I have to admit, while reading some blogs of autistic parents, I wouldn’t disagree with this. There are certainly autistic parents that are so self-centered (and uncaring) that even I can’t deny understanding that their children are having severe problems in life. However, this is certainly not the case for all autistic parents.
Personally, I love taking care of my children and am available 24/7 to them, regardless of anything, as agreed with my employer. And that’s what I truly do. Like I am always there in an instant when their school calls over trouble, which luckily hardly ever happens.
Beyond that, we always watch some movie or series together in the evening, with the exception of Vlad and my wife most of the times. Vlad prefers to play his online game and be alone in his room in the evenings, while my wife actually works during these times. And on Saturdays we always have a family day when we do things together. Like last Saturday, we played a bit of football together. And unlike those parents that watch by the side, I actually join in, with me always ending up being the goalie against all of my children. It’s fun for all of us, with possibly it being even greater to me as I see them smile and laugh throughout.
The reason why it works out for me as an autistic parent is that we as a family base everything on we, not I. The moments I need to spend 1-on-1 time with one of my children, almost always my other children will keep each other busy. It’s like my eldest son Vlad struggles with depression and does need some 1-on-1 time to talk over his feelings, which we always do. And usually at the same time, my daughter Kasia plays some board game or watches TV with my other sons. Same for when Kasia needs some 1-on-1 time, Vlad keeps my other sons busy. Same for how Vlad, Anton and Kasia often cook dinner together, as they love doing so. The values of kindness, respect, charity and teamwork are important at my home. The fact that my children have good values is more important to me than any kind of achievement. The greatest achievement is seeing them be happy and smile, as there’s no greater blessing than knowing they feel good.
Closing words
The reality of being autistic is that it brings difficulties. However, the blessings are able to outshine the bad if you let them. It’s like I could put full attention to Anton not speaking outside of home, but what use has this? I rather see the way he smiles and enjoys his time. My vision of autism is positive, both when it comes to my autistic sons and myself. We might do things differently, but different is still amazing. I am so proud of all my children, they’re amazing in their own ways. And in the increasingly asocial world we live in, being autistic is possibly one of the best things to be regardless…
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