Wednesday, 16 November 2016

Neurodisability and Double Standards.

The world is full of double standards, some areas more than others.

One of these areas, in my opinion, is autism and other neurological disabilities. The world for anyone with a disability is more difficult, but the treatment and expectations of people with neurodisabilities show deep seated ignorance and lack of understanding, and this seems more difficult to overcome as people who do not have very close experience of neurodisability, especially with people who mask, it is very difficult to understand how it feels from our perspective.

It is more difficult for a child with neurodisabilities to be supported well. It is more likely that their diagnoses will be ignored or questioned, because it can't be seen, and behaviours are perceived as naughtiness. It seems to be more likely that the person will be dismissed as lazy, manipulative, selfish, a bully, or for parents to have comments thrown at them such as "Oh they've got the wool pulled over your eyes, Mum!", and referrals for parenting classes (if these were classes specifically for autism, or ADHD, this would be fine, but more often than not they are classes to teach you how to be a decent parent, which in many cases is a patronising waste of resources!).

To illustrate this, I'll use incidents that have happened to us, we have a few already.

Before summer, PDA Boy's school was chosen to take part in the OFSTED SEND reviews. As it was such a tiny school, only one other set of parents and I were there to chat to the inspector.
The other child had a mild, physical disability, PDA Boy, obviously, has ASD/PDA.

The difference in our experience of support and understanding was staggering.

The other child had a representative body to ensure his needs were met, a bit like his disability's version of Autism Outreach. This person came into school and advised on how the classroom could be shuffled round to make it more accessible, advice on individual strategies that would help this child. When the school started to slip up with these strategies, this person was onto them immediately to gently but effectively insist that these things must be done, and so they were, and the parents felt their child was happy and well supported.

This was brilliant, a fine example of how things can work well, the child had a knowledgeable advocate who had the power to make the school classroom a comfortable and easily navigable space for them.

And then we came to our experience.

We have had involvement from Autism Outreach, who are amazing and do their job admirably under the circumstances. In my area, the team lost two members, who were not replaced, which meant that the workload increased dramatically for each remaining team member, they had so many children on their caseloads that only the more severely presenting children were prioritised, and the children with lower support needs were squeezed in as and when it was possible to do so.
Their job was made more difficult by staff members who were resistant to using strategies that would benefit their autistic pupils, and the Autism Outreach lady was at pains to make sure I understood that "work in progress" was the best case scenario we were looking at. Staff attitudes towards invisible diability is a major barrier to many pupils' education in this country.

I had to explain to the inspector (well, I didn't have to, but in the interests of being honest, I felt I must) that whilst we liked the school, and it was a better fit for PDA Boy, I was still unhappy with the lack of understanding, and the unwillingness to take on any information that would have helped him to reach his potential. I was unhappy that vital meetings were rendered pointless (I'm sure I've said this before somewhere!) as the headteacher kept interrupting to say "But we can't see it!" which didn't help anyone, and in my opinion made her look a little obstructive and silly.

I couldn't keep count of comments we had such as "he just needs to try harder” and "he's really manipulating you, Mum".

Work in progress for us meant that school would accept helpful printouts and file them away, never to look at them again.

Helpful strategies were used to a point, but there was an overriding impression that PDA Boy was capable of making more effort, and his failure to progress and his behaviour at home were dismissed as his lack of effort and parenting.

The inspector admitted that this was a familiar thing that he was hearing.
I did point out to him as well that a child who had difficulty walking would be encouraged, but it would not be assumed they were faking their walking problems and choosing to be lazy, something that is directly comparable to the assumptions of children with autism and other neurological conditions.

Another incident can be read in my previous post, A "Private" Diagnosis. I have since spoken to the SENCO about this, and been assured that any implication of doubt was not intended. I believe this, but I think it is yet another example of the double standards surrounding ASD. If PDA Boy had diabetes and that was necessary to be on his profile, where his diagnosis came from and whether it was private or through the NHS simply wouldn't be relevant and wouldn't be included on a document explaining how he could be helped, and things to watch out for.

I've also come across these double standards with my oldest. We are certain he also has PDA. He ticks every box in the criteria. He was taken out of school earlier this year as he wasn't coping, was becoming more and more depressed and was so anxious about going into school that he would often be unable to do so.

Home educating has been tricky at times, but on the whole has been very positive. He is incredibly practical and will spend time working on engines, fixing and restoring them. He also occasionally helps out a local farmer, driving tractors and doing other farmy jobs, so we are confident that he is learning skills that will help him in the future.

The double standards lie in others' expectations of him, and how we should be handling things.
Despite his obvious difficulties in reading and writing (at 13 his reading age was given as age 8), we were constantly told how lazy he was, even when it was pointed out to him that tests had identified processing issues, and strategies had been recommended, but this was completely ignored.

When it comes to disability, seeing is believing. When a child has no unusual features which mark them out as different, other people make judgements which they wouldn't if the difficulties were visibly apparent.

Even when a child's difficulties are explained in detail, it is still ok to ignore and treat them as naughty. If this happened with physical disability as often as it did with neurological disabilities, I suspect many schools would be facing accusations of discrimination, but because ASD is invisible, double standards apply.

So what needs to happen? Well, in an ideal world we need more outreach workers so that their workload is manageable. We need to challenge the oh-so-common opinion that an autistic child is choosing to behave in certain ways. We need the aim to move from work in progress (with progress too often being seen as barely significant effort) to schools working to understand a child's needs and as near as possible meet these needs. We need schools to become places where children, all children, can feel welcome, comfortable and able to work to their potential, not as it is now; schools who work towards OFSTED perfection, whose aims are often at odds with a child's needs.

We need better real knowledge of autism and sensory issues, and how they can present. Currently these things are not understood well enough, textbooks are not great mediums to learn about autistic individuals, but too many experts are too entrenched in their textbooks to learn about individuals in their care.

It would be brilliant if schools could have question and answer sessions with autistic people (including the children in their care), with a platform of mutual respect and belief in what is said. So much could be learnt from those of us who could make sense of a lot of behaviour that baffles those whose only experience of ASD is reading books about it.

1 comment:

  1. This sums up our experience with the schools my children attend completely. How sad so many children's needs are not being met.