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.

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Labelling Leo

Mum reports he is very much a loner and sometimes looks at other children. That is the second sentence of Leo’s latest letter from the Child Development Centre. It took me a moment to realise where that came from: the paediatrician had asked me if my son plays with other children. I said that no he didn’t, but that sometimes he will glance at them if they are doing something that interests him. That exchange is now recorded as me calling my son a loner. The topic of inaccurate medical letters is probably worth a whole post to itself, so I will gloss over that for now. What really struck me was that a paediatrician was willing to label a child, not yet 3 years old a ‘loner’. I am fairly sure that it was intended as a neutral description of behaviour, but I think that as well as being slightly ridiculous, the term carries a judgment with it. In any case I was disappointed, as I had opened the letter, hoping it would contain the diagnosis, but it was simply a description of the appointment. I even recognised some of it.

So we are still waiting for the autism label. I know it is coming, but I don’t know what form it will take: Autism, Classic Autism, Kanner’s Autism, Autism Spectrum Disorder, Autistic Spectrum Condition, Autistic Traits, Autistic. Those are the main possibilities. There is not much difference between them. Less likely is the catchy PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), apparently rarely used in the UK. Will the diagnosis arrive with another label attached: mild, severe, moderate? High or low functioning? I do hope not. To me those are not just labels, but predictions about the future that no-one is qualified to make. A lot of people seem to be anti-label, but I don’t have a problem with the label itself. Labels are everywhere, and they are useful for giving us information about things! Male, female, employee, retired, overweight, confident, depressed, successful. Some labels do create an automatic impression in the mind of the person hearing them. And to the label-haters, I concede that can be a problem. Without understanding, I agree the label is not very helpful. Many people will have their own ideas about what autism is, and they may not bear much relation to Leo at all.

I am ashamed to say that pre-Leo I had got the impression that to be given a diagnosis of autism was to be declared virtually an empty shell, someone who cares about things, not people, someone trapped in a world devoid of emotion who needs to be helped (dragged?) into the ‘real world’. I can’t be sure, but I think these views may have been planted in my mind around the time of the MMR scare, when it first broke in 1998 (don’t worry I am not going to discuss vaccinations). The way it was reported, or at least the way I interpreted it, was that for your child to ‘get’ autism was amongst the most terrible things that could happen to them, that it was akin to losing them. I took that message on board and never had cause to question it until this amazing little man landed in my life. I hope I underestimate people. In the last couple of months I have flinched on three separate occasions, on hearing the word ‘autistic’ used on TV for comic effect. These were funny shows, shows I like. I completely get that they were using the word to describe people who were not actually autistic and that they were not making fun of autistic people. But I wish they would find another word. It was being used as shorthand for all the misconceptions listed above.

When you hear someone is a mother, it tells you a bit about that person’s experiences, but you would probably be aware that it doesn’t tell you much about the person herself. You don’t expect her to necessarily be like other mothers you know, or a mother you saw depicted on TV. When you hear that someone is autistic it really only gives you about that level of information. Yes, there is common ground but many, many variations and differences too.

I had to fight my own anti-label feelings when my daughter started identifying herself as disabled. She was a novice wheelchair-user and had gone from having an invisible disability (Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome) to being visibly disabled. People respected and believed the wheelchair, and I think she was relieved at not only regaining her mobility and independence, but at not having to explain her condition, not having to explain why she couldn’t do things. I could see she was happier, but it was some time before I felt comfortable with any of that.I insisted it was a short-term solution. I worried that when I told people my daughter had chronic pain and fatigue, that she used a wheelchair, that she had to leave college due to the severity of her condition, that this would conjure up an image of a timid mousey girl. Perhaps she was even sitting alone in the corner, the passive recipient of the goodwill of others. The reality was hilariously different; vibrant, confident, opinionated and extremely sociable. I would sometimes see people change their attitude mid-sentence. I think attitudes to physical disabilities have moved on, even in the four years she has been a wheelchair-user. I am not sure the same has happened for autism yet. The problem is sometimes that people don’t know, and sometimes it is that they think they do. The sensory differences, the processing difficulties, the motor planning issues, these things are now the backdrop our daily life, but eight months ago they were revelations. A year ago they were not even on the edges of my awareness. How much does the average person know about these things? How interested are they?

So why am I so keen to get the label? Well, the outside world and the people in it are going to be Leo’s biggest challenge. When you are a child, your first dealings with the outside world come through school. School almost seems to have been designed to create the perfect storm in many autistic kids, and he will need support to help him navigate his way through it all. The label is the first step towards ensuring that support. So far he has been provided him with a fantastic one to one person at pre-school. They understand that cognitively he may be just about keeping up with his peers, and his fascination with numbers and letters means that in some ways he is a little ahead, but emotionally he is still a baby. Around 17 months is probably about right. So when it is time for indoor activities, but Leo wants to go outside, he can. When it is circle time he does not have to sit with the other children. I am still learning to think things through, and when I first heard this I worried that he would get used to getting his own way. I soon realised this is just the appropriate accommodation for his challenges, in the same way that a wheelchair ramp is the appropriate accommodation for his sister. Later on, his accommodations may be a quiet room he can go to during break times, a safe place to eat lunch. He may need a Teaching Assistant with him in lessons. He may need a different environment altogether. Special School. Homeschooling. He may need none of these. I don’t know.

Without the autism label he would get another label: badly-behaved child, maybe spoiled brat. That reminds me of a discussion I had recently about ‘children today’. Someone was telling me they had read in the paper about children who start school not able talk, not even knowing their names. Some of them even in nappies. This person knew my son was autistic, but I pointed it out anyway and suggested (pleasantly) that maybe at least some of these children had undiagnosed autism, or other developmental delays. This was rejected, as the person had a teacher friend who had confirmed that all this was true. The discussion then turned to Disability Benefits and how some people (like my son) deserve them, but that some people (other people) get them just because their child has tantrums and is badly-behaved. I explained (only slightly less pleasantly) that these children may also be autistic. I wonder how widespread those kind of views are. In those circumstances a label might be of help, even if it is not completely understood.

I have only just started learning about autism, and learning to embrace it is even newer. I make mistakes in the labels I use. I don’t want to think about the future, or I think about the future too much. Some days I devour the writings of autistic adults, some days it is too painful to read about how hard life on the spectrum can be. At other times I think about the past; when Leo had just ‘passed’ his 10 month check-up and we would  have silly, self-indulgent discussions about what he would become. I even have days (less frequently now) when I wonder if we have got it right. I might see him doing pretend play sequences (for that is what they call brushing teddy’s hair and feeding him), and think well he’s not supposed to do that, maybe it’s all a mistake.  But that is another reason why we need the label. It stops me living too much in the past or the future, and brings me back to where we are now. Strangely, although the future can make me feel scared and the past can make me feel sad, in the present everything feels just fine.

worst case scenario

Warning: This post contains some traces of denial, in spite of my intentions to have dealt fully with this issue in previous posts.

Take it one day at a time and don’t look too far ahead. Good advice for any parent, especially an autism parent. It was not what I wanted to hear, however. I wanted predictions. I wanted to be told, of course he will talk, of course he will go to mainstream school. I wanted to know that he would be indistinguishable from other children. Really I just wanted him to be happy, but I saw all those things as prerequisites for happiness.  Once I had that reassurance I would be able to concentrate on helping him in the present without all this worry about the future.

When the Speech Therapist told me about non-verbal children who go to school with their books of communication pictures strapped to their bags, I  nodded and smiled, but I was horrified. Why was she telling me this? And saying it like it was good news? She must be crazy.  Not talking was not an option. I was not ready to make the leap required to imagine that these things might become a part of my world. In a very short space of time I have become completely at ease with these things. We are absolutely rocking picture communication, as well as makaton signs and I would not be without alternative communication. To me it’s not alternative, it is communication. My son can tell me stuff – it’s awesome. In fact I sometimes forget that other parents don’t have to regularly spend an evening sorting through laminated pictures of people having baths and stories and brushing their teeth.

But I have been here before, or somewhere like it. I should have known better than to go into a panic about imagined worst case scenarios. My daughter has Hypermobility Syndrome (Her diagnosis is actually EDS Type III but people tend not to have heard of that). By the time she was diagnosed I had heard about people with EDS ‘ending up’ in wheelchairs. I hate that expression, it sounds like once you have ‘ended up’ in a wheelchair nothing further is possible. I was determined that whatever else happened she would not ‘end up’ in a wheelchair. It was the worst that could happen. And it would not happen because I would simply not entertain the idea.

Well I was wrong on both counts and I even find it slightly hilarious that I used to think like that. She uses a wheelchair almost all the time, and it is by no means the worst thing that has happened to her. The last few years has been like watching her body crumple from the impact of an ultra slow-motion crash with everyday life. She downgraded her dreams one by one, until even the downgraded versions were ridiculously out of reach. It would take her the whole day to get up and dressed. To my mind the way out of this was positive thinking; set some goals, work out the steps to achieve them. I became increasingly frustrated as she refused to engage with this version of how things would go. She would become animated about new ideas for how to style her extraordinary hair, but new ideas for college courses left her flat. Eventually she said: I am already trying as hard as I can. have to live my life now, and I want to enjoy it. I don’t want to spend my time thinking about a future that may never come. And my favourite quote: it takes all my energy just being a bum.  I didn’t like it but I had to accept that taking it a day at a time worked for her in its own way. She is certainly one of the most vibrant people you are ever likely to meet, and she has carved out a life that is full, joyful, and very different from what either of us imagined. I thought I had learned a valuable lesson from all of this, but it seems I had to learn it all over again for Leo. Hopefully I have managed it a bit quicker this time around.

I faced some of my fears for Leo when we visited a garden centre at the weekend. Daddy was looking at greenhouses for an extended period and we were trying to entertain ourselves, first with the water features (a bit too fascinating – careful Leo I don’t fancy paying for a broken one), then the micro pigs (I loved them but Leo was firm in his total lack of interest). Finally we compromised by looking at the carp pond. I heard a voice behind us, very loud and confident, sounding as if he was in the middle of a conversation with somone: Hello my name is Edward and this is my mother Genevieve, what is your name? It was a young man aged between about 16 and 19. It took me a few seconds before I realised he was talking to me. He wasn’t making any eye contact so I still wasn’t sure I was supposed to answer. I hesitantly introduced myself and my sons. He made some more comments and asked some questions; do we have pets, does Leo go to nusery, does he have any nicknames? He looked steadfastly at the water the whole time as his mother stood alongside him. She smiled and made some friendly comments of her own. I was impressed by the way she gently supported and guided him, whilst letting him be himself. I hope I am not being too presumptous by thinking that he was probably autistic. We had a pleasant if unconventional conversation until Leo became agitated and we had to leave. Putting aside the issue of speech, this was my worst fear, a son who was visibly autistic into his teens. And yet he seemed happy, his mum seemed happy. They looked like they were having nice lives.

In my ‘about’ section I say that I do not know what severe autism means. The reason I say that is that I think it is possible for someone to be severely affected without that being obvious to others. However, when people ask if Leo is severely or just mildly autistic I think I do know what they mean. It’s about visibility. When he gets older will you be able to tell? I still don’t know. But I do know my goal is not to make him fit anyone else’s idea of normal at the expense of his happiness and ease with himself. I want him to be happy, I want him to make his own choices. I want him to live a life that has meaning for him. That may be a conventional get a job, get married kind of a life or it may not. These are vague goals I admit, and I hold them for him very loosely. But the only way to get there is a day at a time.