This is a common and reasonable question, and the answer might surprise you. I am sure you will have seen some people with Down Syndrome (maybe only via social media or television) who have been able to communicate well/ compete in large sports events/ go to University/ work as an actor or model. You may have also seen or heard of people with Down Syndrome who struggle in education settings, are maybe non-verbal, or require a lot more support.
So, the question is... are there different levels of DS?
The short answer is ‘No’.
You do not get different ‘levels’ of Down Syndrome; someone cannot have ‘mild’ Down Syndrome or ‘intense’ Down Syndrome.
They just have Down Syndrome.
But, I also know this short and sweet answer doesn’t fully explain why there are so many different levels of ability within the DS community. So let’s look at some other factors….
First though, I’ll start by telling you about a conversation I had with someone when Oriana was very little.
Stefan and I were carrying her out from the car in her baby carrier, and a retired nurse we know saw us. She came over to say hello and meet Oriana, and as she looked down at her cradled in her little seat she said “Oh, she must be very low grade - you can hardly tell she has it. That’s a good sign”. On the surface, this may seem like quite a reassuring interaction, especially to have this confirmed by a nurse.
Firstly, this is a completely incorrect statement - there is no such thing as having ‘low grade DS’.
Secondly, see the bottom part of this post to see why you cannot correlate physical markers of DS with IQ (i.e. the comment about hardly being able to tell).
Thirdly, it is impossible to tell with ANY child at only a few weeks old (with only a glance of them in a car seat) what their long term abilities and potential will be.
Fourthly, (and possibly most importantly) it is quite offensive to people in the DS community when you say that they/ their child ‘barely has DS’; they will have had a specific test taken to determine if they have it or not, the results will have been more or less a Yes/No situation. It is woven throughout their DNA. It doesn’t help to perpetuate the idea that DS is something to be feared, or to try and ignore the diagnosis by sweeping it under the carpet - it is simply a part of who they are. Trying to reassure someone that their baby with DS is ‘almost typical’ is refusing to accept their child with the diagnosis they have; you are still trying to force them to fit into/ compare them with a typical child, and this will be interpreted as not accepting their differences or diagnosis. There is no shame in having DS, and no shame in being a parent of a child with DS. Don’t reinforce outdated ideas by telling someone that their DS isn’t that obvious… why would it be a problem that it was obvious? Is it something we are meant to keep hidden?
In the above situation I personally didn’t choose to take offense, but a lot of other people would do. I know this person was well meaning and was trying to be encouraging, and I am sure if you are reading this and have ever found yourself saying something similar it was also meant with a good heart. Hopefully by the end of this post, you will be able to back up those good intentions with a more thorough understanding of what DS actually is.
So...how are there not different levels of DS?
Firstly, we need to understand what Down Syndrome is.
It is a chromosomal difference - something written throughout your DNA. You either have it, or you don’t. There is a specific test done to confirm if you have these extra chromosomes or not. It is not a disease or an illness, it is not a spectrum. If you aren’t familiar with what causes DS, or the three different types, please read this short blog post I have written to give you an overview (it’s literally about 1 minute long).
What is the explanation then, for the range of abilities within the DS community?
Firstly, it is key to remember that just because all individuals with DS have extra genetic material, it doesn’t mean that they are the same (in the same way that not everyone with XX chromosomes are the same, just because they are female). As with all people (with and without any diagnosis) they are an individual first and foremost, and so will have individual differences, strengths, weaknesses, and interests.
However, some further and more specific examples of what should be taken into consideration when explaining why there is such a range of abilities within those who have DS (and what I think people are usually getting to when they ask about levels of DS) are…
People with DS can have a dual (or more) diagnosis
Having DS is just a small part of what makes up an individual. Someone with DS is still able to have any other diagnosis a typically developing peer could have, such as Autism, ADHD, Cerebral Palsy, Oppositional Defiant Disorder, Fragile X Syndrome and even additional chromosomal differences. Any of these can interact with the diagnosis of DS to make learning harder, communication more difficult, socialising overwhelming, gross motor skills delayed etc. For instance, it is not uncommon to have DS and ASD (Autism spectrum disorder) which can change the way someone with DS would learn. Also, if a child with DS had another diagnosis which meant they needed a lot of time in hospital or missed out at school, this could negatively impact their development (e.g. some surgeries may delay the development of gross motor skills as they are bed bound for a while, on top of having a degree of low muscle tone due as a result of the DS).
Environmental factors
As with typically developing children, children with DS who have grown up in an environment where there is minimal stimulation/ social interaction/ encouragement to develop and learn skills through play and exploring, can have their long term development affected. Unfortunately it is probably more likely that someone with DS may be exposed to an environment like this. Firstly, if caregivers or teachers lack confidence/knowledge in interacting with a child with additional needs they may just assume that the child’s skill set is already determined and is limited, and not invest in further building this up (I don’t think this is actually true with any child or diagnosis). Fortunately I think this is less common now due to factors such as continued research into DS, families with DS showing what is possible on social media platforms or in the news, a general improvement from people in terms of understanding, accepting and including those with differences, and people with DS no longer being shut away in institutions as happened around 60 years ago.
Also, an uncomfortable point to acknowledge is that children with DS from certain cultures in other countries are often put into homes and await adoption. In these communities they often won’t have access to the medical support that they need/ no one to play and develop their skills/ not be shown love or given the opportunity to build relationships. As with any other child, this has huge implications for their long term development and health. On social media you can follow families who have adopted children with DS from these kinds of childrens’ homes, and it is important to take into account the history of the child when looking at where they are with their development. Neglect (physical and/or emotional) negatively impacts ANY child, not just those who are typically developing.
Genetics/ family factors
Again, as with typically developing peers, children with DS will still take on traits of their parents. For example, Oriana is really into observing others - she loves to watch the world go by and there isn’t much that she misses (some would call her nosy, haha). Her observations lead to her mimicking phrases, actions, facial expressions, and her favourite scenes from her programmes. This part of her personality is definitely something she has taken from me!
Some parts of children’s personalities and interests will lend themselves better towards learning and specific hobbies, better than others… just as with any other child!
Other things to consider when talking about ‘levels’ of DS are:
There is no correlation between physical markers of DS and IQ. Those who may have more obvious physical markers (such as no nasal bridge, low muscle tone, almond eyes, smaller and lower ears) don’t necessarily have lower IQ than someone who has far less obvious physical markers. So when you talk about ‘levels’ of DS, are you referring to their physical appearance looking more obviously like someone with DS, or their understanding and intellect?
Don’t mistake someone finding it harder to speak (for instance, low muscle tone or tongue/mouth shape may affect the clarity of someone with DS’s speech) with them having less understanding. Just because you may not understand what they are saying with as much ease, doesn’t mean they have less understanding or a lower IQ than someone with DS who has more clarity with their speech.
I really hope this post has explained why there are no ‘levels’ of DS, the factors that can come into play when it looks like there maybe are ‘levels’ of DS, and also why it can be upsetting to suggest someone has a ‘low level of DS’ despite you meaning well. If you have any questions on anything I have written, please let me know and I will try and answer it (my science is pretty rough though, so bear with me haha).
As always, thank you so much for listening and making time to learn with us - it is so appreciated! x
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