Debate 2: Parental Perspectives
Rebecca Wood, an academic in autism, education and inclusion.
Katherine Runswick-Cole a disability studies scholar. Both are parents and have children who have been given a diagnosis of autism.
I was the person who had initiated the assessment of my son for a possible diagnosis of autism. It was partly because he didn’t seem to be understanding things and couldn’t cope with any of the various toddler groups and arty/musical activities that I took him to. He would enjoy them sometimes, but more often would get quite stressed and so I had to take him home. But above all, it was when I started trying to take him to nursery that he became perceived as ‘a problem’. Staff told me they were worried about him, and people mentioned things like assessments and Statements (of Special Educational Needs). It was horrible. He was only two and I just wanted to enjoy having him. I felt under a lot of pressure to say something like: “Yes, I know there’s something wrong with him”, although I didn’t, because it wasn’t what I felt. My reluctance to engage in this sort of negative view of my son meant that I was positioned as being ‘in denial’ (as opposed to ‘an anxious mother’ when I took him to the doctors). He had some difficulties and I was concerned by these problems with stress/unhappiness, but he was also delightful and my overall feeling was that I wanted to celebrate his existence.
After the diagnosis, it’s fair to say that things degenerated quite badly at the nursery where he was. I had my first experience of a SEN meeting and complete strangers sitting down with confidential reports about your child. It’s incredible that this is rarely questioned, or that a way is not found to make it OK for parents. Your child has become this entity to be mulled over and defined in documents by people who, unlike you, don’t love him dearly. They might not have even met him.
At his nursery, they sort of panicked once I told them of the diagnosis, and that resulted in them changing his support worker and moving him from one group to another, and then back again. Needless to say, this upset my son very much, but it was the start of a lifelong pattern of people – because of the label – not expecting him to have human reactions, or to be upset by the things that would trouble any other child.
So when I decided to look around for a new nursery, I felt pretty determined that I didn’t want to say at the outset that my son had a diagnosis of autism. It wasn’t that I didn’t want him to have help and understanding – quite the opposite – but I just knew, that the minute I said – “He is autistic” – this would be the only thing in people’s minds. They wouldn’t be interested in anything else about him, and their heads would be full of the paperwork they would need to complete and applications for funding etc., as well as lots of negative associations with the term ‘autism’. My son, as a person, would just disappear. He also had a few medical issues and I recall well the crashing inevitability of the response of the consultant when we told him about his autism diagnosis: he started dismissing some of my son’s medical symptoms and responses to the pain he was in as ‘behaviour’.
I did eventually find a really nice nursery where they let my son develop and socialise in his own way, but it was a short-lived period of happiness and calm, because I was soon to be tramping around primary schools and here it was even more tricky. Never getting past the school secretary when I rang, I was told that the only option was for me to go on group visits with other prospective parents, and so I didn’t feel I could ask questions pertinent to my son, when other parents would ask things like “Do you do Jolly Phonics?” or “How soon do they start learning French?” Having said that, on one school visit, prior to which I had mentioned that we were applying for a Statement for our son, I was suddenly pounced upon by the Head and deputy Head, who shooed me into their office to discuss my son’s SEN, while the rest of the parents continued the tour. I could tell how anxious they were that a problem child might be landing in their midst. Again, it was horrible. Most of these negative reactions were from people who had never met my son or read anything about him. The loving, parental soul is a delicate thing, and everyone just seemed to be trampling on it.
It makes perfect sense to me!
I think it touches on so much of what I’ve been trying to explain about the way in which my understanding of autism has changed.
I thought the label would help, I thought it would bring understanding, access to resources and that it offered a way forward. Of course, it wasn’t presented as some sort of choice, it was something that my son ‘had’, he was a ‘classic example’.
I didn’t understand that the label would swallow him up. I didn’t know that every single aspect of his personality and interests would be read through the lens of the label.
And I didn’t know that the promise of resources that the label of autism seems to offer would remain undelivered. I think the autism label offers what the social theorist Lauren Berland calls cruel optimism. This is the idea that the label promises much, but delivers little, but we hold onto that label in eternal optimism that it will one day deliver on the promise of understanding, acceptance and resources which is the reason why we seek it in the first place. We just can’t let go.
I went from a person who didn’t like conflict, and respected ‘the professions’ to finding myself engaged with endless conflict! Multi-Professional meetings where I was addressed as ‘mum’, my male partner, turning up in a suit with a note book and immediately commanding some sort of respect. Not being allowed to meet the head teacher without a witness present! Letter after letter to the local authority. Registering for Tribunal twice – ten years apart – for the same issue. I got to the point where I was exploding in meetings – I think that is still the most difficult thing for other people to understand, that it really isn’t having a child who is different that is the cause of the upset. He has grown into a fantastic young person who inspires so much joy in those around him. He brings so much to the party, I can’t even begin to articulate it well enough. But dealing with the services we need to engage with is what has taken its toll on me.
I’ve been trying really hard to let go of it – to stop reading my son through the autism label, to respond to his strengths and difficulties outside of that frame. I want to try to get other people to understand him from where he is, to know that just because ‘they’ve worked with autism’ before, that doesn’t help them very much with the young person in front of them. They need to learn from him what works and what doesn’t, how best to support him, what his hopes and dreams are. He doesn’t need ‘fixing’, that is not their job.
And by the way, no one has ever worked ‘with’ or’ in’ ‘autism’ – they’ve worked with a person who has attracted that label.
It saddens and frustrates me that discussions about diagnosis still revolve around the notion that diagnosis and identification of needs results in provision of support, and that this justifies the whole process. This inevitably means that certain categories of children are identified as ‘needy’, while others are not. That’s really not helpful for anyone. In my view, all children – and adults of course – have ‘needs’, and everyone needs support. It’s just that some are very visible (because they’re not embedded in current practices and accepted ways of being), and so are considered unusual or severe. If a child wants to cuddle a toy in bed, for example, this is not only completely accepted, but even actively encouraged as an emblem of ‘normal’ childhood. But if a child wants to hold onto objects during circle time at primary school, on the other hand, this is considered problematic and even disruptive. I am not denying of course, that some children and adults might require very particular forms of support, and even a lot of it, but it would be much more useful to see that we all have different types of needs, and that these can vary at different times of our lives. And that environment plays a large part in this. If the environment is right, needs tend to lessen.
I agree that spaces set up to accommodate ‘difference’ are a good thing but it frustrates me enormously when these are branded as ‘autism friendly spaces’. When I think about things like autism friendly cinema screenings, where they turn the lights on, you can move about and so on, I always wonder about people who for whatever reason would also prefer that and whether they feel that they can come.
I prefer it when those events are described as ‘relaxed performances’ – then you don’t have to identify with a label to get the support.
A big issue too is visibility. Being ‘identified ‘ as autistic can actually paradoxically mean that the person disappears, metaphorically and literally. Although in some arenas (autistic spaces, schemes which are led by autistic people, for example, or set-ups which are generally more flexible and tolerant), it is the opposite of this, and that, in my view, is a good thing.
I also had another thought about access to resources. Some of the resources that my son had access to because of his label were absolutely hopeless. He was sent to a social skills group where they worked through a booklet. Laughable, as supposedly ‘one of the things we know about people with autism’ is that they don’t transfer learning to other contexts so how you were supposed to transfer your social skills from a booklet to a ‘real world’ social situation I have no idea. One of the really useful things school did do was produce a visual guide to an overnight school trip – with pictures of where you would be walking, eating, sleeping etc. It was great and really useful but the next year my friend’s daughter who has a learning disability, but ‘not autism’, but equal difficulty imagining what something like a night away might be like, wasn’t given the booklet for the same trip. I’m sure the defence would be ‘but she’s not autistic’. So the way the label has been taken up sometimes leads to poor practice and inequality in the distribution of resources!!
What you say about resources came up in my PhD research and I also found similar issues when I worked as an autism education practitioner. Materials are made under the guise of differentiation, based on a generalised notion of what works for autistic children, not always with a great deal of thought about how truly useful they might be.
Ex Dx: What do you mean by the ‘diagnostic lens’? Isn’t the diagnosis necessary for parents in the current system?
I know that diagnosis is sometimes a passport to resources, I know that this is particularly the case in the current system. But what I’ve tried to argue in my writing is that the ‘autism’ story about a person should be seen as just that – a story and one of many, many stories that can be told.
So I can talk about my son listing off his ‘symptoms’ of autism or I can talk about what he’s interested, what he enjoys. But his label means that even when I do that his interests get re-inscribed back into the autism diagnosis – “oh, he would like chess, pylons, Star Wars’ or whatever BECAUSE he’s autistic. If these interests are ‘symptoms of a disorder’ then this constructs them very differently from ‘the interests a young person has’. If loving looking at pylons is a symptom of the disorder, then I guess, as a ‘good mother’, I shouldn’t take him on a walk with pylons lining the path. If his interest in pylons is just that, an interest, then ‘a good mother’ encourages her child’s interests and should go and see those pylons.
The lens applied to a child fundamentally changes the way we see the person and what is made possible or impossible, desirable or undesirable and even permissible or impermissible in their lives.
So I think that we need, at the very least, to pay attention to what impact the label is having in someone’s life, whether or not they or anyone else choose to use it or refuse it.
Since we started this conversation, I’ve been thinking a lot about whether or not my son’s diagnosis of autism has been helpful to him. But it’s so difficult separate all the different strands that fit in with that whole idea, I find it impossible to say. I would like him to feel confident in who he is as an individual and his own identity as an autistic person. But it’s not really up to me – it’s up to him. Maybe he doesn’t want to think about himself in that way.
I think what I object to was being made to feel in the early days post-diagnosis that my son’s autism was some sort of a separate entity both to him and from us, his parents. His autism was something ideally to be reduced or removed altogether from ‘him’ and he, as an autistic boy (or a boy ‘with’ autism), was somehow in a distinct category from us, his non-autistic parents. Many parents are made to feel like this and so it is hardly surprising that their experience of parenthood is deemed to be somehow faulty.
Two things have changed over the years. One is that I have learned a little bit to see the world through my son’s eyes and to appreciate it from his point of view. Rather like your son with pylons, I have come to look at the things my son likes looking at and to realise that he has a point, that these things are interesting and intricate, or even beautiful.
Secondly, we do share certain things in common and that is a great source of satisfaction to me. Recently he has been listening to classical music a lot and it is really incredible how many pieces he enjoys which I used to be passionate about when I was younger. Not only this, but he listens to the same pieces repeatedly and I am similar: if I get a new CD, for example, and I hit a track I really like, I will play it again and again, even if I haven’t listened to the CD all the way through. So it is a lovely thing to have this music playing repeatedly through the house, that used to (and still does) mean a lot to me.
Thank you both so much, we really appreciate it.