X is for Xperts

There are many, many experts you may meet on your autism journey. Some have impressive titles, degrees and years of experience as a professional. Some, like us parents, are simply dropped in at the deep end and have to become as expert as we can with the tools available to us. Others are a mix of the 2, turning their personal experiences into professional help for others on the path they have trodden.

The first person you will deal with on the pathway to a diagnosis is a GP, Health Visitor or SENCO who can make a referral for an assessment. We went via the local health visitor as Victoria was under 5 at the time but I can’t imagine it matters much which way you go except that school SENCOs seem to struggle to keep on top of their ever-growing list of demands so I’d probably opt for one of the other 2 routes.

The NHS site suggests that your child will have “an assessment” which you might have to wait a few months for. The reality is that you will likely have many appointments over a long period of time before a conclusion is drawn. The first couple of experts we saw were paediatricians at the local hospital some 6 months after first asking for a referral. After measuring her height and weight, they basically observed her playing and interacting 6 months apart to see if and how she was developing. My overriding memories from these appointments are that V was terrified of standing on scales or against a wall to be measured, I spent both sessions urging her on the build the tower of blocks, or sort the shapes like she did at home to “prove” she was normal and that given our concerns about her language development it was ironic we were completely unable to understand a word the paediatricians were saying. In mid-July 2017 they referred Victoria for an autism assessment. Yep… that’s right, we thought we had already been referred but actually you are referred to someone to decide over a 6 month period whether to refer you!

It was around a year later before we saw the next of our experts, the Speech and Language Therapist (SALT). The main reason autism assessments take so long (in Kent in particularly, but nationally the story is similar) is because of a lack of qualified SALTs. I believe moves are being made to train general paediatrician’s to carry out these assessments to ease the bottleneck but I’m not sure how far this has gone. The SALT we saw was excellent and gave us real confidence as she spotted and explained things in Victoria’s communication we hadn’t really picked up on. So does she have autism? That wasn’t for the therapist to say, it’s just one more report added to Victoria’s file.

It’s worth pointing out at this stage that under the NHS a Speech and Language Therapist only seems to provide individual assessments. I’ve no idea how to access “therapy” such that they could address Victoria’s communication challenges – there just doesn’t seem to be provision for that outside of private care.

The next set of experts we didn’t get to meet. The mysterious “Multidisciplinary Panel” met in December 2018 to discuss Victoria and the various reports. I’ve no idea who is on this panel but they must be experts as they are tasked with deciding whether Victoria does indeed have autism or not.

Our last expert on the pathway to diagnosis was a paediatrician we met in January 2019 the other side of Maidstone (all experts up until now had been based locally). This was where we thought we were going for another assessment session but were actually handed the diagnosis. This expert was an expert in delivering pre-considered diagnoses and lots of leaflets.

Since the diagnosis we have met with other experts. An audiologist confirmed that Victoria’s hearing is not having an effect on her ability to learn. A subsequent expert suggested we have her assessed for Auditory Processing Disorder, so who knows.

This was painful enough but then you need to deal with a whole load of other experts to get an EHCP. We dealt with an excellent Educational Psychologist who assessed Victoria’s learning profile and gave advice on the types of interventions that would help Victoria at school. There are then people at Kent that are expert in copy and paste of those suggestions into a document they call their own. The experts at school then decide how to implement those suggests in a way I am sure is quite different to that which the Ed Psych was thinking.

Talking of the experts in school I hate to break it to you but many are not experts. You might naively think for example that an EHCP will secure 1 to 1 time with a teacher who is an expert in the field of teaching children with autism. What you are more likely to get is an inexperienced teaching assistant working with many children at the same time without specialist training or knowledge or even the time to properly prepare lessons. What we have discovered goes on in schools could feel Facebook on its own but suffice to say, question and challenge every expert.

You may get the gist of my general feelings towards “the system” by now – there are genuinely talented experts who want to do the best by your child but are hampered due to poor resourcing, wasted funds and lack of time to do what they really want to be doing – giving your child the best opportunities. There are however people that are genuine experts in their field and who can and do make a difference.

The team at We Are Beams is one such example. No agenda, just genuine people with the time and ability to help where it matters. It’s why I am raising funds for them and keep mentioning them in these posts – they are experts worth talking to.

Last month I had the privilege to meet Lily from Off the Blox with Language. With her business partner Jonathan they are creating a range of resources to help parents get their children reading and communicating, building on their combined knowledge of autism through both personal and professional experience to deliver a simple but innovative way of reading with your children. Lily spoke of some very interesting ideas and research projects she is trying to get off the ground with the University of Kent which I am looking forward to seeing the results of. If your child (with autism or not) struggles with reading or communicating at a level you would expect, I would urge you to check out the Off The Blox website or Facebook page for more information. I hope these particular experts can get to the people that need them via schools and charities as Lily’s knowledge and passion for the subject was plain to see in the few hours we spoke for last night at Fathers Club Kent where she was a guest.

If you are aware of any other “experts” in the field or autism or learning disabilities please do get in touch or add them to the comments below.

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