Tuesday, 7 March 2017

Quick round up of Harrogate NAS fringe conference.

Harrogate International Centre is the venue for this year's NAS Autism Professional Conference.

The Harrogate branch of the NAS organised a fringe event on site, free to parents, carers, autistic people and professionals, with two speakers and a brief chance to ask Mark Lever, Chief Executive of the NAS, questions. As the conference itself is prohibitively expensive, it's brilliant that there's an opportunity to at least have a sample of it. I do plan to save for next year's event and spend both days there though.

I thought I'd write up some of the highlights of the event, but please bear in mind I'm not brilliant at listening and writing notes at the same time, so these are the moments that struck me and stuck in my mind.

The first speaker was Adam Harris, inspirational founder of AsIAm in Ireland, an organisation that not only strives to raise awareness, but to bring about understanding and acceptance for young autistic people. It's so good to hear autistic people speak about themselves and their experiences, and even when he was explaining rather more negative issues surrounding autism, he managed to do so amusingly, accurately and positively. Many people recognised themselves and their children in his words.

Mr. Harris told us his analogy of growing up autistic, likening it to an airport travelater, whilst others are effortlessly reaching their milestones, gliding along on the travelater, those of us who are autistic are desperately trying to keep up, running alongside. Meeting milestones, but doing so later, when others have gone on to the next step. I've never heard this analogy before, but it really struck a chord, both for myself and my children, and it is one I will use in the future when trying to explain what it is like to be autistic.

After a short break Peggy Walpole (OBE) took the platform. A specialist teacher with the Service for complex autism and associated neurodevelopment disorders (SCAAND), Ms Walpole spoke passionately about her role and encouraged parents to access the service, located at the Maudsley Hospital.

What particularly struck me about her talk (and I'm cringing at myself that I didn't take anything really positive from it) was how distanced from reality some professionals are. They are undoubtedly experienced and brilliant at their jobs, but she rather assumed that any child who needs this service will be able to access it.

This flies in the face of what many families go through year in year out. In many areas CAMHS will only accept referrals for children deemed severely affected by mental health. In many areas this means that autistic, or possibly autistic children, can't even get a foot in the door. Mental health problems, when connected to the possibility of autism, whether diagnosed or not, are considered normal and not something the child needs help with.

During her talk, Ms Walpole mentioned that although the service is open to anyone in the UK, only one child had been referred from the north of the country. Rather than this being a lack of need, I would see this as a failing on the part of referring services in the North. There are many parents struggling to access adequate support for their child, and it's not for lack of trying. Referrals are refused, or are accepted and children quickly managed to discharge without anything actually being done to help them, unless blaming parents counts as help.

Every time I've seen or heard people in professional roles involved with autism talk about their job, I get the same message, that things have never been better, all these services are accessible, teachers are all working their socks off to make things better....

Unfortunately this is a difficult message for many parents to swallow, as our experiences are completely at odds with the positivity and tales of schools working hard to get things right.

At one point I almost fell off my chair as she spoke about how good Academies were in respect to pupils with special needs, that because they're not under the thumb of the local authority, they are able to bend rules and go the extra mile to ensure our children are well supported (I'll give you a minute to stop laughing).

PDA boy's school was an Academy, so I have read with sinking-hearted interest of how others' children coped in their Academies. Anecdotally, these schools tend to be very rigid with their approach to rules. Rules for rules' sake, reasonable adjustments suit the school rather than the pupil, and because they can claim not to be under the umbrella of the local authority, this seems to allow them to avoid supporting children and to actively manage children out of the school. So to hear Ms Walpole speak so positively about them in respect to special needs was something of a disappointment. Unless Academies are better in her locality, then I fear this is another case of the schools' sales patter working wonders at selling the idea of excellence and inclusivity.

On the whole the mood after her talk wasn't quite as positive and relaxed as it was following Mr Harris' talk. I think from a parents' point of view, it really showed the disconnection between services and the children/families they serve. The intention is there, the recognition for the fact that some autistic children are more complex and need a different approach, but little understanding of how very difficult it can be to access anything when you're the proud parent of a complex child.

Following this came the arrival of Mark Lever, Chief Executive of the NAS. He told us about the recent campaigns from the NAS and how they were being received, and then opened up the floor to ask the audience of their thoughts on which areas needed more attention.

I grabbed my chance and pointed out that many families are at a disadvantage due to masking, that it's difficult to get support, difficult to get anyone to take things seriously enough to refer the child for diagnosis, and difficult to get any recognition through CAMHS that, even though this child in front of them looks fine, they are actually incredibly anxious and, once home after a day at school, can barely cope. This opened up some robust discussion, this is obviously an area that negatively affects many children in school, and I sincerely hope that the NAS will consider running a campaign that highlights the less stereotypical side of autism.

One answer to this problem was more teacher training, but having attended some teacher training sessions, I'm not convinced this would be the answer. In the limited time that a training session takes, it would be impossible to impart any more than the most basic, stereotypical information about autism, and the downside which many of us have found is that a little bit of knowledge is a dangerous thing, and encourages dismissal of parents' fears because the teacher has attended a training session, therefore the teacher understandably believes that they have a good working knowledge of autism when in reality they've barely scratched the surface, when faced with a child who, to them, does not appear to be autistic, it can be impossible to persuade them otherwise.
What is desperately needed is information about autism alongside clarity that it is very individual in nature. As I've said before, parents are a largely untapped source of knowledge, instead of being dismissed and considered Mum or Dad in a sea of experts, we need to be considered key players with vital information to share.

There also followed questions and brief discussion about adult autistics with aging parents, deaf autistic children and GCSEs. Unfortunately as I was at that point reeling at my bravery of asking a question, I didn't really take in what was said on those issues, but Mark Lever did write them down and I hope all these very important issues are addressed.

The Harrogate branch of the NAS must be congratulated for arranging this event, and I hope I can attend more in the future.

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