Note beforehand: This blog post may feel incomplete. Sadly, I have had severe trouble with focusing on this blog post, hence I ended up quickly writing an end to it. I might revise it in the future, but I just wanted it to be shared by now, as I’ve been busy with this blog post for over a month already, same for 2 other blog posts that probably will be shared very soon. The “A Look Into My Life” blog post series is generally hard to me. I’m a a very private person and worry about sharing too much and possibly doing harm to my children by doing so. At the end of the day, my family is most important to me. I do hope people find some use in reading this blog post.
As those who read my blog, follow me on social media or even simply talk to me in any way will know, I say that all 3 of my sons are autistic. Now, this is to quite some people a controversial thing to say. The reason for this is the fact that my youngest 2 sons are diagnosed with genetic conditions.
The difficult part about several genetic conditions is that what is known as “autistiform behavior”. Autistiform behavior is behavior similar to what is seen in those with an autism spectrum diagnosis, but isn’t actually always regarded as an autism spectrum disorder. This could be for various reasons, including the fact that this behavior doesn’t impact the person’s daily life.
Now, statistics of autistiform behavior are not able to be (easily) found. However, the statistics of an autism spectrum disorder in certain genetic conditions are able to be found. And on average, this is about 50% for males, and only 25% for females. Which is an important reason why some communities revolving around certain genetic conditions don’t want people to equivalate autism with genetic conditions, which I don’t disagree with. A genetic condition is more than just that 1 part. Sadly, many people don’t understand this, which causes a lot of stigma.
Take for example fragile X syndrome, it’s almost always equivalated with the intellectual disability. And while looking at the statistics in the USA, 96% of males and 64% of females with fragile X syndrome have an intellectual disability or a developmental delay. You might want to take notice that this means that 4% of males and 36% females with the condition don’t have this and will be looked down upon because of the stigma that does factually exist. Scared to even be honest about your condition, which does truly happen, as I got confirmed by a parent of a son with fragile X syndrome without an intellectual disability in the USA.
Which is also true for my son Aleks, who’s 9 years old at this moment. Every time I get asked about what condition he has, I will always tell that I’m not allowed to share this of him. And you could say that he is young and this shouldn’t be his choice, but I am a parent who believes in respecting the wishes of my children, as it’s their lives and not mine. Beyond that, I don’t actually disagree with his choice. As the genetic condition he has is well-known for intellectual disability as well, which he doesn’t have. Same for some other symptoms. In fact, he’s in many regards lucky, as the physical features are less apparent. Not many will take awareness of short height at this age, for example. Even less as his eldest brother is short for his age as well, regardless of them not being biological brothers. However, his condition not being that visible can be both good and bad, as the fact that it is less seen doesn’t mean he has less problems. Hence why it’s so important for him to be able to say he’s autistic, as that’s one of his major difficulties. Other parts are his ADHD, hearing loss and vision problems, which are all recognized parts of his genetic condition.
As Aleks explained while asking him some questions needed to write this post, he rather tells people the actual difficulties he experiences than the genetic condition. As while naming his genetic condition, there’s never anyone who even knows it. This results in people looking it up and thinking that he has all possible symptoms. To actual borrow the comparison my eldest son made in his blog post before, it’s kind of like people going online and looking up their symptoms and believing they have something far worse than they actually have. The same applies to Aleks his condition. Yeah, he does need more support than his older sister and his eldest brother need, but he gives so much back as well. The joy seen in his smile makes you unable to not feel happy as well. And he smiles almost always.
In most ways the opposite of Aleks of my middle son Anton. The previously stated fragile X syndrome (FXS) is what Anton is diagnosed with. And he does have an intellectual disability. He’s less-verbal, on the edge of being fully mute and the disorder known as selective mutism, according to our current psychologist. What this means is that he does speak at home, but usually doesn’t in most other situations. Although, he even hardly speaks at home. And we’re lucky the school all of our children go to helps a lot in the regard of not requiring him to speak at school, except in 1 on 1 situation with his teachers and tutor. He also has the typical physical features that are often seen in regard to FXS, which includes a long face, high forehead, big ears and asymmetrical head. He has also mild strabismus, gastrointestinal issues, hypermobility, scoliosis, sleeping problems, emotional issues, autistiform behavior and hypotonia.
Compared to Aleks, the condition of Anton sounds, and is, more severe. However, Anton does say he feels happy, as long as he isn’t required to do more than his can handle. Yes, that’s the way he explained it. And he does love his brothers and sister a lot, regardless of having a hard time handling the hyperactivity of Aleks. In an upcoming post about autism specifically, this will be further elaborated. (The blog post is almost done, I just got distracted and started writing this and another blog post first instead of finish that one.)
The greatest problem for both of my sons is that they can’t state their conditions without getting some generalized look at it. It’s really sad, especially as genetic conditions are so common. Current estimates are that 6 out of 10 people have a condition with a genetic background. To be clear, you might want to even take notice that the autism spectrum disorder that I spoke about before, even that is recognized as a genetic condition. There are so many genetic conditions that people are not even aware of that they’re genetic conditions. And all of them end up with the same problem as I stated before.
The reality about genetic conditions is that it could be mild or severe and varying in the symptoms that show. We are too focused on thinking easy, forgetting that medical and psychological studies are so hard for many because the subjects are so hard. Even I couldn’t tell you all about my sons’ conditions, as I’m not all-knowing, nobody is. It’s why those few minutes of listening to others are so very important. To not judge somebody before actually being aware of how they truly are. And also accepting people for how they are and wish to be called. Which includes that if my sons want to call themselves autistic, but not by their genetic conditions, that’s their right. It’s their lives, not yours or mine. And everyone wishes to live their lives that fits them. There’s just 1 thing that matters about genetic conditions to me, which is that all with a genetic condition are amazing and worthy of love. I will leave it at that.