Low vs. High Functioning Bullshit

This week, a family of four (and their dog) was killed by the father in a murder suicide.  Despite the fact that the family had marital problems (according to at least one news source), everyone is jumping on the bandwagon that the father did this because his two children were Autistic.

Let me be clear – no one knows why this father did this.  Could be because his children were Autistic.  Could be because apparently his wife was thinking of leaving him.  Could be because he was just an arsehole.  Who the hell knows?

In one article I read today, I saw this quote…

Autism Awareness Australia CEO Nicole Rogerson said thousands of parents around the country shared similar experiences as the family.   “This horrible event, at least, highlights the significant difficulty many families who parent kids at the severe end of the spectrum go through,” she said.

This quote is similar to quotes always put at the end of such articles – such quotes that always state that Autistic children, especially the low functioning ones, are such a burden that well, gosh darn it, it’s a wonder more parents aren’t murdering their own children.

Plenty of people are writing about how wrong it is to murder your children, regardless of their diagnosis.  What I want to visit here is this trend towards such quotes singling out “low functioning Autistics”, or as Nicole here put it “kids at the severe end of the spectrum”.

I assume we all know what type of child Nicole is pointing towards.  Can’t speak, not toilet trained, low intelligence, other medical or developmental issues.

Let’s forget for a moment that most children grow out of most of these issues given the right supports and accommodations.  I am quite often told I am high functioning, but I smeared my shit as a toddler and was late to the toilet training party.  I had issues with speech as a child.  Autistic children are still children.  They will learn and develop and grow up, just like children who are not Autistic do.  Developmental delays are delays, not brick walls in your child’s path (unless you make them so).

As a mother I get it.  I really do.  And I’m going to admit something here, in public, once and only once.  I actually have what the general Autism Mom* would classify as a “low functioning” Autistic child.  I also have what the general Autism Mom* would classify as a “high functioning” Autistic child.

And when it comes to the day to day looking after of said children, my high functioning child is MUCH more “difficult” to deal with than my low functioning child.

Sure, my low functioning child has had all the issues associated with being “low functioning” (no, it’s not your business how this manifests for him).  However my low functioning child is happy.  My high functioning child however is a massive mess of nerves and quite often suicidal because of it.  He might be coding programmes on Visual Basic to help his little brother learn his times tables, but he doesn’t cope so well with day to day life.  When we are called to the school, they are calling about our high functioning child.  It is our high functioning child who is spending all his time in the support centre while our low functioning child is in the mainstream classroom.

These arbitrary functioning labels do not help anyone, so STOP FUCKING USING THEM!!!  All you do is create an “us vs. them” culture that helps no one.  You can’t judge how a person is doing based on their ability to shit on the toilet.  If a person needs help and accommodations, then they need help and accommodations, and screw these little boxes that society wants to put us in.

I’ve said it before, and I’ll say it again – the “spectrum” is NOT linear!!!  It’s a colour wheel.  There are no ends.  There is no this end or that end.  There is just Autism.
* The term “Autism Mom” is used to describe a non Autistic mother of a child with Autism.  “Autistic Mom” is used to describe a mother who herself has Autism.  Autism Mom’s who describe themselves as such, are being highly offensive, so if you do that, then stop please.

** Yes, I’m Australian, but I used Mom instead of Mum because my readership is not all Australian, and this trend to describe oneself as an Autism Mom started off as an American thing.  In my mind, I use this pronounciation, so I also use this spelling sometimes.  It depends on my mood.

*** For the record, my husband and I discussed whether or not to publish this blog post.  We value our children’s privacy highly however at the same time, my parenting journey is also my journey, and sometimes advocacy needs some examples. So no, my kids Autistic qualities are not up for public discussion.  I won’t be answering questions about toileting, or how far behind my child is at school etc etc.  I don’t like telling people that one kid is high functioning and one kid is low functioning.  I don’t like telling people that one kid is easier to deal with.  I’ve done so, because I know my kids will understand once they are old enough.  I’ve done so, because if I can change a few minds, who might go on to change a few more minds, then maybe, one day, we can finally get past this whole “functioning” bullshit, which hurts both my kids!!!  These labels hurt my kids when it’s assumed that because of their functioning label, they can do A, B or C, or that they can’t do A, B or C.  These labels hurt all our kids.  And they hurt Autistic adults too!!!

Besides, I’m teaching my kids not to be ashamed of who they are.  So the issue of whether or not I should have written this post – that isn’t up for discussion either.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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4 comments on “Low vs. High Functioning Bullshit
  1. Thank you!

    As an autistic mum to a “high functioning” autism child, I despise the whole high functioning vs low functioning crap. Both mu personal and my professional experience of auties and aspies, is those who are allegedly “low functioning” are the ones who 1. get (somewhat) affordable support (of the little support there is out there) and 2. are happier.

    The only way I can seem to get my daughter any support now that she is a teenager is through mental health programs – and she probably wouldn’t have mental health issues if she was getting the autism support she needs! And as for mental health support, it’s an under funded, under resourced joke at the best of times – not to mention being full of incompetent so called “professionals” who have no understanding of mental illness, let alone what it’s like to have autism and mental health issues.

    On a side note, I actually didn’t realise you were an aussie 🙂 Someone out there who will understand what a joke our healthcare system is – not to mention how expensive it is! I think it’s particularly bad at the moment for my daughter as we live in an NDIS area, so we still don’t have NDIS funding (due to long waits) and had already been waiting several years after having moved into the area when all local support agencies were defunded to be replaced by NDIS. So my poor daughter has now been without support for 4 years because of the introduction of NDIS while she was on waiting lists.

    Anyway, sorry for the rant, but thanks for the post!

    • Hi there 🙂

      Thanks for your comment!

      I hear you about the waiting!!! I first needed help when I was pregnant with my first child and my pelvis fell apart. I couldn’t walk without excruciating pain. This was late 2004. I didn’t have a diagnosis, so couldn’t apply for help. I saw multiple GP’s trying to get answers, but didn’t get a diagnosis until after our second child was born, in 2012. We applied for Disability Services Queensland, and it took a year to get an appointment. A few months of paperwork and interviews and we were approved, but put on a waiting list. NDIS came through, and they defunded most of DSQ. People on the waiting list were told they would have to wait for the NDIS. The NDIS is rolled out here mid 2019. People who are not already receiving support have to wait until mid 2020 to apply. My son, who hadn’t even been born yet when I first needed support, will be 15 years old before I can even apply. Add on any waiting lists at that time (and there are sure to be some).

      My son, with Autism and Ehlers Danlos Syndrome and multiple medical issues, will be fifteen before he can receive help for disabilities he was diagnosed with when he was six years old (Autism), and seven years old (Ehlers Danlos).

      I just wanted my kids to have a normal childhood. I wanted to be able to take them to the park. Simple things. Everyday things.

      Trying to get decent health care is just as frustrating, and usually just as impossible.

      • Don’t even get me started on Qld Health! My oldest wasn’t diagnosed until just before her 7th birthday. I finally got my medical records (some of them anyway, the rest they refuse to hand over) and my records very clearly show her autistic behaviours documented from before she turned 2… and then written off as basically “refrigerator mother syndrome”. If I expressed concern that her behaviours were not neurotypical, I was dismissed as neurotic and a hypochondriac, and if I didn’t raise concerns every contact (because I was tired of being told I was a neurotic hypochondriac) then I was labelled as being ignorant of my daughter’s “issues” and uncaring etc. Even when eventually it was acknowledged that she wasn’t “normal” [not an insult – I am proud of not being “normal”. I am not average, nor do I wish to be, and I am proud that my kids aren’t average either], she was initially labelled as “just” having ADHD when she was 5 and her ASD behaviours ignored until she was just too old to access early intervention support.

        It wasn’t until she was a teenager that she was finally diagnosed with JHMS – officially a week before me but because I didn’t get a copy of the paed’s report until several months later, we actually found out about my diagnosis first.

        My diagnosis was actually picked up by two physiotherapists within days of each other (I didn’t mention to the second physio what the first had said until the second physio said “I think you have JHMS”). I have been seeing various specialists – rheumies, orthopods, pain specialists etc – for nearly 20 years and not one of them considered JHMS/EDS other than a vague reference to “mild? CTD” in my notes a few times that they never told me and I only discovered it when Qld Health finally coughed up most of my notes after a very long battle that seriously endangered the life of my younger daughter in their refusal to hand the notes over.

        It’s interesting you mention your pelvis falling apart. I’m guessing you had SPD? Thankfully I didn’t have that with my first pregnancy (not severely anyway), but I had it severely with my second pregnancy. Tried everything possible to cope with it, but not walking/standing was the only thing that made it bearable.
        I would also say that my EDS is what led my uterus to rupture during my first labour.
        I sometimes wonder if EDS (particularly HM type) is actually more common than doctors realise but just that it goes undiagnosed until many years (or decades) after people first show the symptoms.
        I guess I’m just a little frustrated for my daughters’ sakes because my older daughter has started showing a lot of issues related to it over the last 1-2 years and all we’re getting is “nothing can be done except see a physio for exercises” (and at nearly $100 a pop even with private health insurance and no functional public option, I don’t know how to afford it).
        And they won’t even look at assessing my younger daughter because at nearly 3, she is considered too young even though she is the most excessively flexible child her age I’ve met.
        It just seems that even specialists don’t take serious health concerns seriously.

        • Yeah I had SPD with both, but my first pregnancy is so memorable I guess, because I had no idea what was going on, and doctors wouldn’t believe me due to my mental health history (I was a druggie, despite never having had a drug problem – I’d never even tried drugs before – or they thought I was looking for attention. I was even told “you’re pregnant, not sick”). I’ll never forget that grinding with every movement – ugh!!!

          We got the run around with our eldest’s AS diagnosis… Not fun. He was finally diagnosed just after his sixth birthday. Luckily, we were given special permission to receive one years worth of funding, because we could prove that we had been seeing specialists for years already. I would have spent that money on equipment and not therapy if I had known better though… With our second, he needed speech therapy though (for speech issues, not just social), so there was no choice.

          Our youngest was three when we were all diagnosed with EDS. I think ordinarily they might have waited (I think five is the usual age they like to wait until???), but his skin is certainly stretchy, which isn’t an age thing so much, and given the family circumstances, it just made sense. I advocate to everyone to get the whole family assessed at the same time. Individually I’m not sure the boys would have diagnosed with EDS, but together, there’s just no doubt that is what it is. I can give you the name of a great paediatric geneticist in Brisbane if you want. He assessed me as well, given we were all there at once. My email is Lindamadhatter at gmail.com Drop me an email anytime 🙂

          I do think EDS is more common than we realise at the moment. It’s just that doctors don’t know much about it…

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Pissed off since 1995. Mad as a hatter since way before that.

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