What helps. What doesn’t.

Aside

My son is autistic. I embrace thatand I also want to help him live more comfortably in the world. There is not any one answer to how I will do that, but at least I know what my intentions are. I also know that I need to presume competence, which is not the same thing as having high expectations. It took me some time to understand what it is and why it matters. I still have some trouble explaining it, but here goes….It is knowing that the fact that Leo is autistic makes it more difficult to assess what he understands. He may well understand things that he appears not to – but for a variety of reasons he is not currently able to show this in ways that we can understand. In a way, that is what autism is all about. Expressing yourself is hard. It does not mean that you have nothing to express.

It was not an easy journey to get to that point. I thought autism sounded like something you would fight and overcome, rather than embrace. Acceptance is the only choice for me.  If Leo were to consistently receive the message that I was trying to change him, that he is not okay the way he is…that could resonate throughout his life. It is also much more pleasant for both us on a day-to-day basis. Acceptance is not a call to inaction. It is simply a starting point for working with Leo so he can find his way in the world.

But he also has another diagnosis: 16p11.2 microdeletion. The numbers refer to the place on chromosome 16 where genetic material is missing. This can be passed on from a parent or it can happen randomly. The diagnosis is in addition to autism, and this can be confusing, as when I try to explain it, it can sound as if it is part of it the autism diagnosis, or the cause of it.

Rather than a list of symptoms you get a list of risks. Most of them will not be experienced by people with the microdeletion, but compared to the average person they will have a much higher chance of having one or more of the things on the list. It gives you some statistics, but as the abnormality was only discovered in 2007 there is not a lot of data to go on. I try not to take too much notice of the numbers in any case; they don’t tell you anything about your child. The list includes but is not limited to: speech delay, fine and gross motor delays, obesity, autism, low IQ, hyperactivity, aggression, seizures, schizophrenia. Some people are entirely unaffected. Another way to explain it would be to say that being male does not cause autism, but it does give you a greater chance of being autistic, or indeed having special needs (go to any special needs school and observe the boy:girl ratio). This is the same principle. Association rather than causation.

I find Leo’s microdeletion harder to talk/think/write about than him being autistic. There are no positive sides to it. After embracing autism and presuming competence it all became harder again.  The best I could do was a vague link between undergoing adversity and growing stronger. Sitting with, tolerating and investigating those uncomfortable feelings has helped a little.

They tested us, Leo’s parents (if our results were clear then no need to test our other children). We waited months and months for our results. I have a suspicion that they were sitting in someone’s in-tray for some time, as a chasing phone call prompted a return call from the doctor. Our results were clear. This means none of the other children need testing – they are no more likely to have the microdeletion than any other person. This is clearly a good thing, but I was struck how I felt no relief when the doctor said the words, or even later on. I even felt a little sadness creeping in. The bit of me that wanted to say to Leo you have this unusual thing but it’s okay because I have it too was making itself known. I hadn’t realised it even existed until the results were in. I knew I was not concerned about blame or guilt, but I was not fully aware of the part of me that was holding onto a kind of hope that I could make it all okay for him by the two of us being in it together.

The period of waiting revealed an interesting phenomenon. I started to find signs of 16p11.2 in my other children and in myself: Caitlin has seizures, James had speech delay. Caitlin had great difficulty learning to ride a bike – was that due to motor delays? Miles did not roll over until he was 8 months old. I am excessively clumsy. Is there a pattern of problems with motor skills?

There are also some facial features associated with the syndrome and that list really drew my attention during the waiting period. They are so subtle, and within the range of features that you might find in anyone. They don’t scream out at you, they are almost nothing, and if you keep looking you can convince yourself you have found them. Large head, wide-spaced eyes, long philtrum (the space that connects the nose and the upper lip – think John Major). Low set ears, tiny folds in the corners of the eyes. Leo has these features (apart from the low-set ears). I noticed the long philtrum when he was born and I thought it strange as it didn’t seem to be in either of our families. Even stranger, it seems to have shortened over time and is less noticeable now. Caitlin has beautiful almond-shaped eyes. Do they have that shape because of tiny folds in the corners? I have a large head. Does James have low-set ears? I even started to look at strangers, at people on television. The features were everywhere, and search continued even after it lost all meaning.

The results put an end to the search for good, but it did remind me of the fact that you very often see what you expect to see. And that means you stop actually seeing. You start telling yourself a story about what you think you see, and you think you are understanding it. And then you’re off ‘making sense’ of what you have seen and putting the pieces together and yes it all fits…except it doesn’t and it is nothing more than a story.

Caitlin, uses a wheelchair, and most of the time she wheels herself, but sometimes her partner will push the wheelchair while she holds their baby. She has had people come up to her, eager to share what they think is an amusing mistake. I thought you were holding a doll they exclaim, I didn’t realise it was a real baby! What they don’t realise, not at the time anyway, is they have just shared  their assumptions about a girl in a wheelchair: she won’t have a relationship, or a family of her own. It is far more likely that at the age of 20 she would still be playing with dolls, so that is what they see.

I wonder how many assumptions are made about Leo and children like him. Some assumptions are made by people who do not know about his diagnosis: the lady who stared at him during meltdown in the doctor’s surgery did not say anything, but it was pretty clear some assumptions were being made. But there are also assumptions made by people who do know his diagnosis; his notes continue to say that Leo’s play is limited and repetitive when in my opinion it is not. He is developmentally delayed and this must affect the assumptions of the professionals involved. When the pre-school manager told me he can recognise the numbers 1-3, I could tell she expected me to be as pleased and surprised as she was. The thing is, he knows numbers up to 20. And the alphabet, the names and sounds of the letters. And a few words too. I tell people this, but it seems they do not hear, as it does not fit the picture they have built up of a child who is delayed in all areas.

I wonder how many assumptions I make without realising. Of course, that is the problem with assumptions – you do not realise you are making them! I sometimes find I have assumed that he has not understood something that in fact he has.  I wonder every day about how best to counter this tendency. Knowing it is there is the first step. Slowing down is the second. The mind is so quick to take over and run off with itself. It is much harder to watch and wait without judging. The third is replacing anxiety (mainly about the future) with curiosity about what will happen in this moment. All of this creates the conditions in which it becomes easy to presume competence.

A possible fourth way (I am hesitating about including it) is to stop comparing him to other children. I hesitate because the way I do this at the moment is to largely ignore other children. This is not sustainable, not least because I have my own example of what is (at least it appears to be at this point) typical development in my own 15 month old. It is worth pointing out that in my distress at how far behind he is ( at the age of 41 months he is currently assessed as 16-26 months in all areas) I can end up making assumptions about other children. Another boy called Leo who we met when we used to go to mother and toddler groups caused me to be envious of the ease with which I presumed he would breeze through life. We next met him at an autism group, newly diagnosed.

Still, for the most part, I know other children have the potential to upset me, and I live in a bubble, observing other children only briefly, out of the corner of my eye. If I can find a way to simply observe without judging, I might even make useful discoveries. Other children are much more relaxed than Leo, whose muscles are often tensed. I get used to the way he is, but when I see him next to other kids, it is as if he is braced against life. It is hard to learn when you are that tense. This is useful information and could have gone unnoticed. Nevertheless, it is often hard for me to look, simply because my mind will start running away with comparisons, worry kicks in, and it stops being helpful.

It is a process. You become distracted with other things, and assumptions, anxiety and judgment and grow everywhere like weeds.  You simply need to clear them away and start again. Like weeding, and most chores, it is not something you do once and then it is done. The weeds come back, but the more you attend to it, the less of a chore it becomes.