The Aspie #1 – Explaining… Autism 101 (Part 1): Life on the Spectrum

Finally, for Level 3, I have picked Savanna to represent the highest tier. It’s a tropical climate between 8° to 20° above and below the equator [10]. Why tropical? Well, when you have an autistic person with a lot of support needs, it can sometimes be a constant battle against sandstorm-like meltdowns, which will frequently cause ordinary parents to burn out from exhaustion. On the contrary, some parents may have the blessing of round the clock carers or people who can ease the burden that comes with this tier. Although matters can be complicated by autism being part of a cocktail of disabilities, both physical and mental.

And that last angle is where my Level 3 Example comes into play, the one and only Harvey Price. He is the son of Katie Price, who needs no introduction if you have consumed any iota of reality television featuring her in the 2000s or 2010s. Where I got a true grasp of why Harvey belongs in this tier is from her 2011 documentary Katie Price: Standing Up For Harvey, a copy of which is available on YouTube by clicking here. The premise is Price demonstrating what caring for Harvey is really like (at the time, Harvey was nine-years-old) in response to this joke Frankie Boyle made on a Channel 4 comedy show of his in December 2010:

“Apparently Jordan [Price’s nickname] and Peter Andre [her most notable ex-husband] are fighting each other over custody of Harvey. Well eventually one of them will lose and have to keep him. I have a theory that Jordan married a cage fighter [presumably referencing former Mixed Martial Artist Alex Reid who Price had ended a relationship with rather publicly in 2009] because she needed someone strong enough to stop Harvey from fucking her.” [11]

I’m personally not a fan whatsoever of Boyle’s style of comedy, primarily because of how easy it can cross into Tasteless Territory, and when I first heard it in the documentary, I completely understood why someone like Price would find it very offensive. The April after, Ofcom, the UK’s Communication & Television Regulator, ruled that Channel 4 had broken two parts of its Broadcasting Code, required the joke be censored, and remarked that:

“The fact that a public figure chooses to expose some aspects of his or her child’s life in the media does not provide broadcasters with unlimited licence to broadcast comedy that targets humour at such a child’s expense.” [12]

Channel 4, though, were pretty defensive and argued that “everyone is fair game in Frankie’s eyes” [12]. And part of me does think there is a conversation to be had about, for example, where the line is between raising awareness of a disability, and the reality for those who care for that person, and straight-up exploitation of a disabled person for clout. But it seems to me that Price intended for this documentary, and others she has subsequently made featuring Harvey, to be the former, which is something positive she has done in her crazy career, I guess. She also tried to get Boyle to issue a right of reply, or at least see her son in action for who he really is, but he clearly was not interested whatsoever, which I think is rude and a missed opportunity on his part to explain what Channel 4 really meant by their remarks, but I digress.

Now back to Harvey. In this particular documentary, we learn of the cocktail of disabilities that he has on top of Autism. The first is Septo-optic Dysplasia. According to Great Ormond Street Hospital, it is diagnosable if at least two of the following three abnormalities are present: Optic nerve hypoplasia, midline brain abnormalities and pituitary gland abnormalities. According to their statistics, only 1 in 10,000 children are born with this condition, and of those, one-third have all three abnormalities. [13] Harvey is said in the documentary to be one of that third with all three present. The fact he has hallmark number one also contributes to him being legally blind. And the second is called Diabetes Insipidus. It is different from regular Diabetes and best explained by Harvey’s grandmother Amy who described it as: “He’s got a continual thirst; he can’t regulate how much he drinks in his body.” [11] As a consequence, he is on a series of medications for life.

By the way, I know people will find the fact I cited Harvey as an example of Level 3 slightly problematic primarily because of the fact he is the son of a reasonably privileged (at least until this year) and well-connected woman. In my defence, however, he is the best example that I know which explains what life at Level 3 can be like and it’s also worth remembering that I also vaguely described two other ways autistic people can be at this tier, although I’m not aware of any reasonably known examples of those and I’m not prepared to cite ordinary people I may know as examples without their permission.

The point I’m trying to make in lots of big words is the Autism Experience is different for everyone. And this Sunday, I’ll be presenting a general overview of my particular experience thus far. I’ll be describing the hallmarks that I display most and provide examples of some of them in action. I’ll also talk about a typical week for me and invite you the audience to exchange notes and ideas on things related to coping with Autism daily.

In fact, I wouldn’t mind ideas now. Tell me in the comments section below or via Information & Contact Me what you want to see me talk about in terms of my interests, experiences, views on the politics of autism, etc, etc. I’ll try and get around to as many of them as I can but then again, I may not. It depends on me and if I’m actually interested in doing them. I’ve no problem reading all suggestions and giving an honest opinion, though! And, if there is anything about this post you think I should change or discuss in more detail, feel free to inform me too!

Until then, I’ve been The Aspie behind The ADog Blog, speaking by myself, for myself. Unlike Autism Speaks.