Active waiting

When I explain that my son is autistic I often add that we are ‘waiting for diagnosis’. This is a lot less passive than it sounds. It has involved many activities: intense research, trawling the archives of my own memory, in-depth discussions, careful (but not entirely objective) observation of my own child and other people’s children. It has also been accompanied by a continuous hum of low level anxiety that may have contributed to my current outbreak of hives; itchy unsightly bumps that as well as keeping me awake at night, are a constant reminder of the various types and levels of discomfort that my three oldest children experience on a daily basis.

The wait is nearly over for us, and in the next couple of weeks we will cross over into ‘diagnosed’ territory. Probably.  There are only two possible outcomes (okay, so there is also the halfway house diagnosis of ‘autistic traits’, unlikely for a toddler maybe?) I sometimes imagine how wonderful it would be to be told that Leo is not autistic – not because being autistic is a terrible thing, but because it undoubtedly does make life harder. The world is set up for people who are not autistic, and whatever you do in life the assumption is you are not autistic.

I can already see this when adults try to approach Leo. I sometimes wonder why they are talking to him like that, asking him questions, asking why he is crying, telling him to look at this or that, pointing at a picture on his t-shirt… don’t they realise that will distress him? Then I realise that of course they don’t. I don’t want things to be hard for him. I don’t want him to have to explain he is autistic and be judged for that, or not explain and be judged anyway.  The reality is that to be told he is not autistic would not be wonderful at all; it would simply raise more questions. If he is not autistic then why does he find eye contact difficult? Why does he not speak? Why does he become so distressed by ordinary events? Why does he run away with no fear of getting lost?

I am looking forward to getting on with things, unencumbered by thoughts of what if they say he isn’t? At our last appointment I watched him in the waiting room, playing with the toy cooker and washing machine in a completely ‘appropriate’ manner, and I had a very clear what if he isn’t? moment. I don’t want to waste my energy on these any more. Even less do I want to have to put my energy into a fight to prove that my son is autistic, and I have huge respect for the parents who are forced to take that journey.

To help with the last part of this waiting stage (why does the last bit always take the longest?) I have made a list of advice to myself. Things I wish I had found out a bit earlier. Things I will need reminding of, as we start the next stage of the journey.

·         Listen to everything, but think for yourself. You get a lot of advice when you have an autistic child. A lot of it is from very experienced professionals who come into your home and tell you to do things like this (and not like that). Don’t take it as personal criticism of your parenting.  A lot of this advice is very useful. However, not all of it will apply to Leo, so keep evaluating each bit to see if it is relevant. For example, I was advised to not read the text of books to Leo as he will not be able to follow a story. I am absolutely sure he can, so although I slowed down a bit, I carried on reading.

·         Grow another skin. I have not quite managed to do this. As well as not taking professional advice as criticism, you need to not get upset by people looking or making comments when your child behaves in unexpected ways.  Rather than growing an extra skin I have found it more useful to think of myself as floating slightly outside the situation, watching myself deal with it calmly and positively. Hmmm. Working on that one.

·          Don’t try to educate the world about autism.This is a great aim to have, but it will exhaust you and you need the energy for other things. In any case, you are still learning yourself. Instead, get yourself a few soundbites to explain autism succinctly, so you can trot these out when required. Protracted discussions have their place but there is usually a better use of your energy.

·         Look into sensory issues! I shied away from this as they were not obvious in Leo. He is more a sensory seeker than a sensory avoider (although not entirely). So many things that seemed to be behavioural were in fact sensory, and so much fell into place when I realised this. I was no longer a puzzled bystander, but could be an active partner and come up with things that actually help in the real world.

·         Throw away development charts and descriptions of milestones. These are useful when you are trying to work out if there is a problem, but once you know there is a problem they are not very helpful. Not to me anyway. Let the professionals consult their charts and give him a developmental age, but you need to focus on what he can do; meet him where he is. His development is very uneven – he can’t nod or shake his head, but he can identify all the letters of the alphabet and even a few words.

·         Be creative. Okay, so there is nothing that induces a mental block like being told to ‘be creative’, but try to think of different ways to do things. It can be as simple as taking a slightly different route to the park or putting his hat on your own head his shoes on your feet. 

·         Stop trying to teach him things and focus on connection instead. He has enough professionals in his life. Related to this is resisting the temptation to test him all the time: Where is the blue car? Where is Mummy’s nose? You don’t really need to do this, there are enough opportunities in everyday life to see if he understands or not. Watch out for his attempts to initiate things instead, that is likely to lead to much more interesting territory.

·         Reduce your own anxiety. About the future, about today, about what other people think, about the fact that the swings are occupied when we turn up at the playground. Yes, there probably will be trouble, but he needs you to be calm for him. It is seriously unhelpful if you are both freaking out, even if you only freak our internally he can still sense it. Diagnosis will not take away the anxiety, so you need to do all you can to alleiviate it. Another one I am still working on.

So, that is my current list of things to do and not to do. In a way, it is a list of mistakes I have made and traps I have fallen into. I am already thinking of more as I type. I am sure I will add to it over the months and years.

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2 thoughts on “Active waiting

  1. If I could tell my pre-diagnosis self one thing, it would be: PT/OT/speech therapy are not the only things that you can do for your child. There are lots of alternative and natural therapies you can do for these kids!

    My son hated going to these therapies and told me “they tell me everything I do wrong” which were not necessarily things that he needed to “change” about himself. We stopped going.

    We started working with a naturopath and now do biomedical treatments, and I have seen so much positive change! It was like the parts of his brain that couldn’t understand so many things was unlocked and he could just DO the things that he struggled with before.

    I could go on and on…

    Great post. You have taken me back to exactly where I was in the middle of last summer. Lots of positive change since then…

    • Hello, it’s great to hear how well your son is doing. In the rush to ‘help’ I think it is easy to unintentionally send your child the message that there is something wrong with them and that they are doing things wrong. You don’t have to be an expert to see how damaging that can be. I hope your son continues to do well.

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