It was while replying to numerous emails about this year’s annual review for my autistic teen’s EHCP that it hit me…..
Why are autistic/neurodiverse young people made to jump through so many hoops? Why is it that something so simple and usual for a non Autistic/neurodiverse young person considered “unusual” for one who is?
My teen son is autistic and has hypermobile Ehlers Danlos (thanks to me, yeah I was diagnosed right after he was born). He was diagnosed autistic finally after the usual years long fight, at 4. So of course, to get ANY support at all these days a diagnosis is a must and what was the Statement of SEN, now Educational Health Care Plan is considered the golden ticket to that support.
So, these annual EHCP reviews have been a part of our lives for years. What was at first, confusing and stressful has become almost second nature to us now. Depending on the professionals involved, over the years the experience has been either like smacking our heads on the wall versus an almost pleasant experience, and believe me we have had both, unfortunately. I say “almost” because I really hope there is a day when “support” for autistic students is no longer seen as an “extra” but rather part of the regular standard school ethos of supporting all students. Then there would be no real need for an EHCP, but that is still a dream (insert harp music)….
But the reality is all educational settings up to colleges and universities, depend on the EHCP to be able to support their autistic students. In these days of financial hell, they have become imperative as schools lack the real funding they need. Having worked in a school for over 8 years and with autistic children and their families for over 15 now including training staff who work in schools with autistic students, I see it all the time. And it is getting worse.
So, here I am preparing for my son’s last annual review at his mainstream secondary/6th form with an autism resourced provision. This review is to be a transitional review as it’s his last year. Usually, when arranging the annual review it involves a few emails back and forth confirming dates and times. But this time, this time because my son dared to ask for something considered “unusual” we’ve had many more emails than usual.
It all started with a PATH meeting, which is basically a structured exploration in a 2 hour meeting of what the target person sees/wants for their future. It looks at what is happening now, what they want to happen in 6 months and then next year. My son was struggling, as I think all teens do, with the question what do you want to do in life. At 18, for example, I walked into a very large university after attending a very small private all girl catholic high school ( yep, born in america, live now in the uk) with a graduating class of about 30 girls, having no idea what I wanted to study so I picked English Lit and I literally walked out about 5 days later. I ended up doing an art and drama 2 year degree about a year later.
So, the fact that my son was able to:
- sit through a 2 hour meeting that was focused entirely on him as he has experiences Exposure Anxiety (Donna Williams aka Polly Samuel reference and another blog for another time) his entire life.
- actually answer the questions, consider possibilities and come out with a plan after, is amazing to me.
And what came out as a priority for him was, get ready, here comes the “unusual” request….
a gap year.
He wants a year off any education to explore other things as well as gain confidence and work on his exposure anxiety.
Not that I didn’t think he was so insightful or knew himself as any almost 18 year old would. But the guts it took, to overcome the emotions that accompany what he was saying, was truly remarkable. But then, my children amaze me daily and always have. What helps of course is the fact that we had already explored a course to take at a local college that he was interested in and visited the college to see what support was offered. The college seems perfect. Attending it a year later shouldn’t be a problem as far as the college was concerned.
So now, his request has become this “thing” that needs to be discussed. Why? well, “if he isn’t in education, then he may lose his EHCP”. What is even “better” is no one seems to know if that is a fact Nor do they seem to know if the EHCP was stopped, if it would it be re-instated for the support he would need to then continue on with education after the year’s break. That seems to be regardless of already having pretty much confirmed the course, the college, and already initiating communication with a view to transition with the college. The college uses the EHCP to base their individual support package for the student.
This is all because my son wants what many others have, a gap year in education…. What other people consider normal for non autistic young people. Why is it suddenly a problem for an autistic young person? A non autistic person says they want a gap year and is often applauded for it. ” go find yourself, grow up, see the world, work a little” and ” it will be good for you”, “explore other options”.. but my child? “oh we need to look into what the LA will accept is the bare minimal requirement to keep his EHCP going” and ” the LA may want to stop his EHCP if he is not attending school or college”.
There is no standard national response to this request either. It seems to change from one LA to another. Someone I know had their child’s EHCP taken away because they wanted a gap year before attending University! This is regardless of the autistic person working on their independence skills and volunteering in the exact area they will be studying at Uni. Another person I know had their EHCP closed because the LA had “nothing suitable” for this person to transfer into after 2 educational settings failed this person abysmally. This person has been at home since.
Now my son has no idea if he faces the same fate, losing his EHCP all because he dared to request a break and unsure if it would be reinstated. He has been in mainstream his entire life. The early years were very good, looking back. In the infants, he definitely received the best support they could offer. In fact, they were instrumental in pushing forward the assessment for diagnosis. He did really well. But then came the junior school and all that was good turned bad through pure ignorance. They really had no idea of autism and really should have. There was no excuse and their actions were abusive in my opinion. The school eventually changed radically as a result of going into special measures. Karma can be a real witch, I say, smiling.
Then came secondary and the 6th form he attends now with their autism resourced provision… He truly blossomed. He had grown more in the first year there then his entire jr years.
But now, after the changes in the testing and the pressures of 6th form, he’s tired of education and just wants a break. A break he not only needs but deserves. It really feels like the LA bank on parents/carers/adults not understanding or having information…
So we have no idea what will happen… and if they say no?
How would that be fair? I think not and believe it could be considered discriminatory.
EDIT: June 2019. Gap year granted with EHCP in place 😁