Autism

How I Win (& Lose) for My Son With Autism

 

Since Nick was diagnosed with autism in 1999, various education caseworkers have been assigned to him. There was a gentle man with a white goatee who retired to Yorkshire. Then we had a disheveled, overworked woman who was genuinely kind-hearted but always on the brink of a heart attack. I think she may have quit. There have been many with brief careers at the Local Education Authority’s Special Educational Needs Department whose names I barely learned before they disappeared, along with whatever progress we’d made in negotiating an arrangement for my son’s education.

 

I’ve fought with them all, it seems, even the ones I liked. Their job was to grant Nick the minimum he needed to continue in school while my job was to make sure he had everything to which the law entitled him. I don’t know how many times I’ve sat in meetings and repeated these words: I will not make deals, nor negotiate away, my son’s rights.

 

Nick has an Education, Health and Care (EHC) plan. EHC plans identify educational, health and social needs for kids with disabilities and set support to meet those needs. Theoretically, the plan stays in place until the child reaches the age of 25. However, the latest LEA caseworker seems determined to remove Nick from her roster. Let me explain.

 

Nick was nineteen when he interviewed for a place on an introductory IT course at a local community college. He was accepted. Several months into the programme, a caseworker emailed me to say that Nick could not continue with the course. Apparently, because Nick had achieved 2 A-level grades at Level 3 (one in French and one in Greek) in secondary school he was overqualified to take the IT course at the local community college. The IT course was for Level 2 and Level 3 students. This level was at or below his previous level of education and therefore the education authority had decided he must leave it.

 

I wrote back, explaining that while Nick had indeed achieved two “C” level grades in French and in Greek in secondary school, he’d done so because he has an obsession with foreign languages. Obsessions are part of the collection of traits associated with autism.  Nick studies languages for hours every day using his phone or computer to access websites and verb tables. His obsession is so extreme, we have to interrupt his drills to get him to answer us.

 

As obsessions go, this is a good one. He speaks with a beautiful Parisian accent, talks like a Greek when in Athens, and charms everyone at our local Ethiopian restaurant with his attempts at Amharic. It also means he has a couple of A-levels. It does not mean he can do IT.

 

Nick’s languages are a splinter skill. They do not reflect a high level of academic achievement generally on his part. He was dragged through his GCSEs, achieving very few on first try. His GCSEs were so bad in fact, that when he applied to study languages at A-level, he was refused. The only reason he ended up studying for those A-levels in French and Greek was because I begged the secondary school—literally pleaded—until at last they begrudgingly allowed him to study French and a few other languages there. “We’ll try it,” they warned me. “But we won’t continue if we feel he can’t succeed.”

 

What a luxury to be able to drop a person because they won’t succeed. Parents of autistic kids can’t do that.

 

But back to my current argument over the IT course at the community college. The local education authority (LEA) would not support him in IT because he wasn’t able to begin at Level 4. Or even Level 3. Months into the computer course (one he loves), Nick was struggling to pass at Level 2. His teachers liked him; he got along in class; he went to college with pride every morning, and he tried his hardest. But the Local Authority was now refusing to fund him. Unless I could convince them otherwise, Nick would have to leave the college mid-term.

 

You might be asking yourself a few valid questions. First, why isn’t this kid with A-levels going to university and studying languages?

 

I have to admit, I had once greatly hoped he would apply for a university place. But it was a dream of mine, not his. Anyway, the requirement for language students may too high for him right now. He can’t write long essays. He can’t speak for lengthy periods, which is why he didn’t get higher grades at A-levels. The oral exams required him to talk for three solid minutes in Greek when he can’t even speak for two minutes at a time in his own language. Even if he lived at home and commuted to university, he could not cope with the pressure. It’s autism—you know, the disability he has. It gets in the way.

 

Here’s something else you may be thinking: If university is too hard for him and the LEA won’t fund him at the community college, why not pay for the course out of our own pocket?

 

A great idea. Here’s why: they wouldn’t let us. And when I found out that his Education, Heath and Care Plan meant he couldn’t just purchase education like any other private citizen, I went a little crazy inside.

 

And finally, you might be asking this: What does one’s ability to speak a foreign language have to do with one’s ability with IT?

 

A great question. I kept asking that. I was told he had to demonstrate that he was showing “stretch” and “progression.” Of course, taking a course in a subject you’ve never done before is showing stretch and progression but the LEA didn’t see it like that. They wanted him at Level 3 as a minimum. No matter how hard he tried, he couldn’t achieve Level 3. His teachers told me there was no chance. And while, they were happy to have him at Level 2 (other kids in his class were doing Level 2) they LEA would not agree. Because Nick had achieved Level 3 in two foreign languages, he was expect to study at Level 3 in IT. That was that.

 

I won’t bore you with all the events that transpired to enable Nick to stay in his course. They took days, weeks, phone calls to lawyers, meetings, assessments, and the kind of tenacity that wrings you dry.

 

More recently,  I’ve spent hours with Nick, pouring over textbooks and websites and blank screens at home in order to help him pass the course even at Level 2. It’s hard for him, but he’s doing it. He has remained in class. It’s worked out  reasonably well. But I am still recovering from the trauma of convincing the LEA to keep him there.

 

What do these kinds of events to a person over time? And now I am speaking of myself, not my son. What does it take from a person to have to constantly argue, cajole, convince, beg, and threaten? It is painful enough to have a child with autism, to watch as he struggles with things other children find easy, to know that the future is (at best) uncertain, to fear that at the time of your own death, your adult child will be in real danger. Must the people who are supposed to help thwart your every effort?

 

The woman at the LEA wrote long, horrible emails to me. I wrote long horrible emails back to her. She wanted him out of that classroom. I wanted him in.

 

I guess you can say I won, but it didn’t feel like winning.

 

How did it feel to this new young woman at the LEA to capitulate at last and allow a young man she has never met remain at a community college? It must gall her that he is now attending college against her will. It must anger her that someone with an A-level in French is doing a lower level course in Information Technology. Imagine how difficult it must be for her. Imagine how hard.

 

I bet she goes home at night and complains to her partner about parents like me: autism parents. Who do they think they are, standing up for their kids like that? Being willing to argue for as long as it takes, being willing to spend every waking hour, as though their whole lives are about helping their children?

 

Who are we? A significant minority, if we stick together.

 

 

 

 

 

 

 

 

 

 

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