The Autism show NEC Birmingham – The Best & Worst around Autism

The Autism Show at the weekend was the best and worst of Autism I’ve experienced in my 5 years invested as a parent, carer and advocate.

The NEC in Birmingham was busy both days, with what looked like a good turnout from various types with interest around the show.  On Friday, as expected, there were more “industry” types in attendance, be it professionals who work around Autism, sell or commission services and equipment and education for example.  There were also plenty of young persons with Autism, some pre-school with parents (who were impeccably behaved), teens and Autistic Adults who showed interest.

This post centres around my experience of the show as a whole, what for me was the best around Autism and the worst that I’ve heard since becoming a parent, carer and advocate for those with Autism.

Primarily my role was working for the service I volunteer for IPSEA  which is a collection of Legal Professionals, Parents, Carers, the majority of whom volunteer for this vital service in ensuring that Young Persons (YPs), parents, carers, foster carers, schools, other professionals and even those in Local Authorities understand the duties and requirements around SEN Statements and Education Health and Care Plans to ensure that students are reasonably and sufficiently supported.

Our Friday slots (which were 30 minutes running all day except for half hour lunch) were booked within the first 30 minutes of doors opening.  Both IPSEA at our stand and another service SOS!SEN was busy all day, both telling about what we do, but also informally answering generic questions and queries about SEN and how people could get support.

The Best of Autism…

On both days I met amazing parents, who, despite the odds and in many cases lack the support, acquired or innate expertise to spin all the SEN plates such as therapy, law, nursing, administration, counsellor, cook, cleaner etc who day by day prove to be superhumans in their “sticktoitiveness” in their duties.

I met the head of a specialist 6th form school who not only sees his duty to educate, but also life skills and critically, a real tangible plan, led by his learners as to a way to get into the type of employment his pupils might thrive in.  He told me of a case where a student who was obsessed with Winston Churchill was offered a position with Blenheim Palace as a result of the Young Person’s amazing performance in their work experience which was fully supported by them.

I met an Autistic Genius who gave a talk to hundreds of people in attendance.

I met two young ladies diagnosed with Asperger’s who were as ambitious about life as they were understanding that their teachers didn’t see the world like they did, and despite that leading to frustration, it was also an opportunity for the student to be the teacher and the teacher to be the student.

In all the clinics’ parents were attentive, children impeccably behaved and patient with me waffling on, and next steps were agreed with parents hopefully refuelled with enthusiasm to go intrepidly onto the next steps of their EHCP journey.

The Worst of Autism…

As an advocate, parent, a carer, a friend of others with Autistic loved ones and someone who has already seen a multitude of harrowing stories with KWADE (Kids With Autism Demand Education) I heard several instances of failure which are possibly far more symptomatic of nefarious intent and action, than mere inability or lack of knowledge around support for Autistic Children.

Children who have a plan already, stipulating 1:1 support for known anxiety and safeguarding issues where their support has been used in other classes due to lack of resource in the school.

The same children, with the lack of support resulting in a meltdown and self-injurious behaviour due to meltdowns and anxiety.

Children, locked in a storage cupboard because they were unable to cope in a classroom.

Children, lied about, suggesting all is well in reviews when psychologists are observing they are in crisis.

Parents consistently being lied to, whether deliberately to obfuscate or due to a lack of professional ability is a matter for those parents and staff to know.

So what next?

We, society, need to decide what is really important;  Schools are having funding cut, Local Authorities are having funding cut, “professionals” are deliberately putting ambiguous wording into reports which legally require specificity, 

Schools and Local Authorities are having funding cut, “professionals” are deliberately putting ambiguous wording into reports which legally require specificity, plans are being written which do not even remotely allow the user to actually plan what is required, by whom, when and how to measure success or failure and need for more intervention, classes are big and teachers do lack resource, professionals are following an apparent policy to “Deny, Delay, Obfuscate, Repeat” when it comes to the SEN Process, and Tribunals are having too many cases, let alone all of those parents who physically and mentally can’t make it to the First Tier Tribunal.

What can I do?

  • Support and include families with kids with SEN
  • Make sure your MP is doing all they can to ensure your schools and those with SEN are supported
  • Help schools to understand the diagnoses and be a part of the techniques learned in school
  • Learn about the techniques from all you can about what your child needs and encourage others to do the same to understand
  • If you know someone with a child with SEN, learn about it, teach your child about it
  • Advocate for change
  • Learn about the law from places like IPSEA etc.
  • Be the changes we wish to see and hope that others follow.
  • Keep on going – when going through hell, it is best to keep moving

Thanks for reading the blog, please feel free to reach me on Twitter @asddadadvocate about this or other blogs and go with grace.

Meanwhile… here is a fantastic new advocate I’ve found for what can be achieved… Musician, Rapper, Asperger’s diagnosed Dan Bull.

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