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.

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