Things Not to Say About Autism

Bear has recently had his two year assessment (for non-parents this is basically like a child MOT where they check the child’s oil and brakes and see if they can build a tower and point to their own nose).  Since I’m pretty much certain Bear is on the spectrum, in the run up to and during his assessment I discussed autism at length with several health visitors.

As well-meaning as they were, there were a few things they said at which I inwardly groaned.

 

  1. ‘I’ve just been on a course about autism.’

This might seem counter-intuitive.  Surely having a good understanding of autism is a positive thing, right?

It would be…if there was any sort of guarantee the course was up to date and in-depth.  Unfortunately, many courses only seem to provide a basic overview and including outdated information.

This results in a professional who believes they’re somewhat of an expert (I can never hear that phrase again without imagining Daddy Pig saying it and if you have no idea what that means I envy you) but who is actually shockingly ignorant.  At least people who know they don’t have much knowledge of a subject are normally willing to listen (I will not make a political joke here, I will not make a political joke here, I will not…)  But they’re so very confident in what they’re saying after one of these ‘courses’ and much less likely to listen to some stay at home mum…even if that stay at home mum probably has autism herself…and certainly has several family members with diagnoses…and has spent hours and hours over the last two years reading up on autism.

 

2. ‘I think everyone’s on the spectrum somewhere.’

They’re not.

I understand people often say this in an attempt to find some common ground and show some sort of solidarity and empathy.  I also understand the very term ‘spectrum’ is confusing and misleading.  In fact, if you look back at my earlier blog posts I’ve almost certainly had similar ignorant thoughts.

The problem with saying ‘everyone’s on the spectrum’ is it’s dismissive of all an autistic person faces.  You are either autistic or you’re not.  Everyone has certain autistic traits, it’s true, but nobody is on the autistic spectrum except autistic people.

Yes, lots of kids go through a phase of lining things up; yes, lots of people are a bit socially awkward; yes, many adults get irritated by tags in their clothes.  Whilst all these things can be present as part of autism, the presence of one or two of them can be completely normal in neurotypical people.

She may eat grass but she's not a cow.
She may eat grass but she’s not a cow.

You might think you’re saying: ‘I know it’s not the same thing but I have experienced some of the things you go through so I can empathise.’  But what the autistic person probably hears is: ‘There’s nothing wrong with you; everyone has the same struggles you do so stop whining.’

 

3. ‘Men are more likely to be autistic than women.’

Okay, the HV didn’t actually say this explicitly but the assumption was there when I told her ASD runs in the family more than just Tyger being on the spectrum and she immediately asked if I meant my husband.  As it happens, Wolf probably is autistic but I was actually thinking about my sister and female cousin who both have official diagnoses and…me.  I don’t have a diagnosis but I’m pretty certain I’m on the spectrum.

For a long time it was thought boys were considerably more likely to be autistic than girls.  Even now it’s cited.  But, the more we learn about autism in females, the more likely it seems that women are just as likely to have autism as men – they simply present differently.

Anyway, I wrote a whole blog post on this subject here so I’ll just include the comic I made for it (because it took me ages to make in MS Paint):

Female Aspie Comic

4. ‘You’re autistic but you seem to cope fine.’

After clarifying which family members are autistic, the HV tried to put me off an assessment for Bear saying if I’m autistic and without a diagnosis maybe it wouldn’t be so bad for Bear to be without a diagnosis.  After all, I obviously cope fine.

Never assume you know how well another person is ‘coping’.

For one thing, I take medication for depression and anxiety.  Many autistic people also suffer from one or both of these.  Whether autism causes depression/anxiety, whether the stress of living and getting by in a neurotypical world causes them or whether whatever it is that makes someone autistic also makes them more prone to anxiety or depression is not clear.  But there does seem to be a link.  When I was at the height of my depression and crying over nothing, up for hours and hours every night because I couldn’t sleep, struggling to get up in the morning, then struggling to get dressed, disinterested in my usual hobbies, failing to hand in essays for my degree I was not coping.

I get so wound up and anxious about making phone calls and organising certain every day things that I avoid them.  Fair enough – everyone avoids doing things they don’t like, right?  Well, in the past I carried on paying a monthly bill I no longer used/needed for over a year (not an insignificant amount, either, and I did not have spare money) simply because the thought of cancelling left me feeling ill.  That’s not really coping.

Sometimes I don’t do anything with the boys and I feed them rubbish for dinner because I’ve become so overloaded by all the noise they’re making I can barely function.  That’s not exactly coping.

There is an assumption among many people that autism comes in two ‘flavours’: ‘low functioning’ and ‘high functioning’.  If you’re ‘low functioning’ you’re ‘non-verbal’ and people tend to assume you don’t understand anything going on around you.  If you’re ‘high functioning’ you’re basically a neurotypical person with a few quirks.

Both views are very insulting to people with autism.  The high/low functioning labels are misleading at best and it’s rarely that simple.  It’s really best to avoid using those phrases.

 

5. ‘You don’t want to label him so young.’

I got this with Tyger, too.

Let me be clear: you are either autistic or you’re not and a diagnosis or lack of a diagnosis doesn’t change that.

I understand there’s a lot of stigma around autism (I really, really understand!) but avoiding the subject doesn’t help with that.

Also, this doesn't happen once you get a diagnosis.
Also, this doesn’t actually happen once you get a diagnosis.

If Bear is autistic, I want him to have a diagnosis at the earliest possible moment.  It can take years to get an autism diagnosis.  That’s not hyperbole for comic effect; it can literally take years.  All the information we have points to an early diagnosis being very helpful in later years.  To me, those two things mean I think pushing for an assessment as soon as possible is the best course of action.

Tyger has coped with nursery pretty well.  Him not being diagnosed probably wouldn’t have made much of a difference.  But when he starts school he might suddenly start struggling.  At that point, instead of embarking on the long journey of getting a diagnosis we can simply look at solutions with the knowledge he already has a diagnosis.  If he never needs any adaptions and we never need to use his diagnosis to put weight behind his need for support all the better!  But it’s good to know he has it if we ever need it.


This list is far from exhaustive.  I haven’t mentioned anything about eye contact, about telling a parent their child ‘doesn’t look autistic’, asking what ‘special abilities’ the child has or a whole host of other phrases and assumptions autistic parents deal with.  These are simply the five I’ve had from health visitors in the past few weeks.  Feel free to add you own in the comments!

 

 

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3 Comments


  1. Great post. My son is just recently diagnosed ASD and the amount of well-meaning but irritating comments we have had. Mostly on the long lines of he seems fine , it must be very mild. There is nothing mild about it believe me, and saying that just minimizes everything we are going through. I know people mean well but, you know, just, dont.

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  2. Great post. It’s horrible when people think they are experts and they actually know very little. I’ve come across that a few times too. I have also tried to talk to people about girls on the spectrum. The figures here don’t really back me up, as officially more boys are diagnosed but I read in a journal about how many girls tend to be higher functioning or very low functioning, with fewer in the middle. The higher functioning girls also tend to manage things differently from boys and are often overlooked. It’s so sad that in this day and age people who should know enough to help actually know very little. I know people are usually well-meaning so I try not to get too upset about some of the things that are said to me. I have often heard the ‘everyone’s a little autistic’. Thanks for sharing, loved reading your post. #spectrumsunday

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  3. Thanks for writing this. I think you are right to try and get an assessment for your little one.. it does take so long… better to get the wheels in motion now. When I asked for my son to be assessed for ASD a professional tried to discourage me by saying, “you don’t want to label him”. My view is that the diagnosis hasn’t defined who my son is, but it has helped everyone around him to have more patience and understanding towards him. It has also meant he’s grown up understanding who he is and why he finds some things easy and other things difficult. Good to connect with you at #spectrumsunday

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