I went to a group today…

I went to an autistic group today…

 

I went to an autistic group today,

people told me I’d fit right in.

They told me I’d be accepted,

my needs wouldn’t be ignored.

I went to an autistic group today,

I should have just stayed at home.

 

I went to an autistic group today,

it hurt when people moved away.

I think I get it though,

my behaviour must have been distracting.

They spoke to me like a child,

invaded my personal space and patronised.

I think it was my difficulty speaking,

they assumed my capability.

 

I went to an autistic group today,

I froze up when I tried to speak.

People laughed and it hurt,

but I think I get it now.

Because this autistic group,

just isn’t for someone like me.

 

I went to an autistic group today,

I listened to their concerns and fears.

They talked about being talked over,

about how NTs silenced their words.

I flinched at the noise, at the harsh light,

struggled with the pace and room.

 

I went to an autistic group today,

people said I’d fit right in.

I went to an autistic group today,

don’t think I’ll be back.

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The ‘magical’ world of autism and the hypocrisy of referring to ‘god-like’ powers

Another study came out referencing the ‘magical world theory’ of autism and some members of the autistic community expressed their frustration at the othering connotations of using terms like ‘magical world’. I find these kinds of things equally annoying – by positioning reactions or responses of autistic people as part of some ‘magical world’, it’s essentially suggesting that autistic people cannot be understood as they are so mysterious and other-worldly. It’s another means of separating autistic people and non-autistic people, which does no-one any good.

I wonder though whether some of the ways autistic people are discussed by the autistic community itself feeds into this othering. After all, researchers and non-autistic people are always being told they should listen to autistic people so using terminology like ‘magical world’ really isn’t that far removed from phrases like:

  • Change the definition of autism from “disability” to “superpower.”!
  • Bring back the tag from 2016. More focus on strengths! #ActuallyAutistic
  • My Autism is my superpower!
  • Who needs social skills when you have god-like brainpower
  • If you look into the lives of the greats in literally any field you’ll quickly find none of them are NT
  • None of the people I’ve known that are smarter than average are neurotypical
  • What and give up my god-like powers to be like an NT?

Those all come from social media pages, posted by people who self-identify as diagnosed or self-diagnosed autistic people. All you really have to do is go on any social media site with a reasonable sized autistic community and start plugging variations of “autism/autistic” + “super”, “superior”, “magic”, “god-like”, or “powers” in and you’ll gets heaps more than just the ones I’ve posted above.

Of course there are other members of the autistic community who have already voiced concerns about this frequent use of “super powers”, “better than NTs”, and “magic abilities”. After all, never mind the fact that it is basically just as othering from non-autistic people as the ‘magical world theory’ which has been so heavily criticised for its terminology; it can also be othering within the autistic community. If you don’t have these savant skills (which are only present in a minority of autistic people), and you don’t have these “super powers” or abilities that people are proclaiming as being such a positive aspect of autism, then you could end up feeling like you don’t even belong in your own autism community.

Maybe some of the people who use the phrases above are being hyperbolic or are just having a bit of a joke, some of them are undoubtably serious about their superiority over non-autistic people (such as the “next stage of evolution” Aspie supremacists). I personally just find the use of terminology like that from within the autistic community as annoying as things as the ‘magical world theory’.

When cost makes a recommendation inaccessible.

It is fairly well known that a lot of resources for autism or disability in general are incredibly expensive. There is a tip that has been circulating for a number of years which suggests that sometimes people have better luck searching for items “for the lazy” than “for disabled people”. Which is a pretty sorry statement in and of itself.

Items which have value for a wide population of people just needs to have the word “autism” slapped in the sales title somewhere and the price seems to shoot up. Software which has become synonymous with autism or disability often has costs far out of reach of families or disabled people. Things are beginning to get worse in some ways as so many products move across to subscription based services – at least in the past once you bought the product you owned it. Now you have to keep paying for it monthly or yearly to retain it.

The reason this particular topic is figuratively rolling around in my head is because I attended a talk recently about autism and successful employment. During this talk, the main recommendation and accommodation discussed – at some length – was the use of the service ‘Brain in Hand’.

I first heard of Brain in Hand at The Autism Show a few years back and it sounded very promising. The handouts for it suggested that this might be a really useful tool for the massive executive dysfunction difficulties I often experienced.

Then I learnt about the price.

Now, there is of course an expectation that a service such as this would be more expensive than average apps or services – you essentially gain access to a mentor-via-text/phone/e-mail service. Those people have to be paid. Fair enough. I just don’t know exactly who can even afford this app – I can only assume a select few people get funded via their local authority, through Access to Work or Disabled Students Allowance, or a generous charity? I don’t know. Let’s break down the costs:

Brain in Hand1

So – £49 a month. Quite pricey yes but when you think about the work involved in managing and maintaining the app and everything perhaps it’s not so bad. Except…

Brain in Hand 2

Okay – so many people who would benefit from Brain in Hand might not necessarily know how to set it up to the best of their ability. If we divide that number over twelve months and add it to the original cost of £49 per month we are now at just over £72 per month. Already this is starting to look inaccessible. That estimate is for four sessions of one hour a piece – some people might need less, others might need more. So for paying monthly we’re looking at £868 for the year, for the yearly discount it sits at £820. Definitely edging into expensive, still feasible that people could afford it each year or that DSA might foot the bill (although only for the time spent as a student).

Brain in Hand 3

Except, that cost doesn’t include access to mentors. So that seems to be the cost if you have family members, friends, support staff etc. who will be acting as your mentors. If you want access to professional mentors who monitor your responses to Brain in Hand and intervene to support you via e-mail/text/phone call then that’s an additional charge. So that’s £90 a month, now sitting at just over £162 a month when the costs are balanced out.  Which brings our total when paid monthly up to £1948 a year and with the yearly discount it is £1815.

Except – that’s not necessarily the final cost. It seems to depend on where you are getting your mentors from. If you want to access Brain in Hand with support through the National Autistic Society then it seems as though you also require a workplace assessment so that brings the grand total to…

Brain in Hand NAS

The point of this post isn’t to suggest that Brain in Hand isn’t worth the cost. I don’t know if it is because I cannot afford it. I will probably never be able to afford it. It’s not just a one-off payment either, you’re paying out each year (although the NAS one may not be £2790 a year if the workplace assessment isn’t repeated). I can logically understand the need for the cost – it’s a niche tool, staff wages need to paid, maintenance needs to be performed. That doesn’t make it anymore accessible.

It’s easy to point to things like Access to Work, Disabled Students Allowance, Local Authorities and Schools and argue that they could foot the bill so the individual wouldn’t need to but when we think of how difficult it is for people to get access to far less complicated supports or services through these systems, exactly how likely is it that people are going to be able to get Brain in Hand funded (indefinitely) through any of them?

So when I sat through a presentation discussion the advantages of Brain in Hand for autistic people in employment, I just couldn’t help switching off because there’s absolutely no way I will ever be able to use it. Which I imagine is the case for a great many people

Death by Indifference

Over on my main site – I recently reviewed Justice for LB by Sara Ryan. It is one of those books that makes the reader angry at the state of the world.

Death by indifference has long been chronicled by organisations such as Mencap; there is not doubt that throughout history many people with disabilities – particularly learning disabilities – have died because the services tasked with caring for them did not.

Parents have written on blogs and social media frequently of the intense difficulty of knowing what their child is thinking or feeling, of how their child cannot tell them when they’re in pain or when something just doesn’t feel right. So imagine just what happens when those parents aren’t there anymore – separated by distance, circumstance or mortality – what happens to their sons and daughters then? The reality is far too many succumb to medical conditions which could have been prevented or are killed indirectly or directly by the very institutes and services which claimed to be there to help them.

Connor Sparrowhawk’s story is sadly not a new one and – for all the optimism that his family’s strength and group support will make a difference – it likely also won’t be the last of it’s kind. Far too often, people let the devastation and heartbreak from cases like this slip away from public consciousness. This cannot just be blamed on the non-autistic community either – whilst Connor’s family and the group of people who have banded around them have taken Twitter by storm, forcing people to acknowledge one of the most important events in the last four years in the autistic community… It’s merely a drop.

Looking at other autism communities that exist such as Wrong Planet or on other social media such as Reddit or Tumblr – JusticeforLB and Connor Sparrowhawk are rarely (if ever) mentioned. Neither terms show up in searches throughout the website or the direct tweets of two of the biggest Autistic Self Advocacy groups – Autistic Self Advocacy Network and Autism Women’s Network.

Why is this?

Why has Connor’s story been lost to the autistic community? Why aren’t they angrier about it, demanding justice alongside his family and the people supporting them? These are communities that exploded during the controversy around fidget spinners for god’s sake, yet on one of the most important events to unfold within the autism community in years – they are silent.

And to answer my own question, I really don’t know why.

Dr Sean Murphy – “He’s way too low functioning to be a doctor”

Discussions of ‘The Good Doctor’ and ‘Atypical’ have cropped up all over autism communities and social media. Having watched Season 1 of ‘Atypical’ (although I neglected to review it and will have to go back to fix this oversight) and at Episode 2 of ‘The Good Doctor’, one thing that has struck me is a particular criticism that keeps cropping up about both main characters.

This idea that they are “low functioning” or “severely to moderately” autistic.

There are other criticisms of the shows which make more sense – such as the fact that both characters seem to lack a backstory or history which makes their characters stilted, or the lazy cliches of the supporting characters – but I must admit I am baffled by the comments around “functioning”.

Now I am not a big fan of functioning labels but will be using them throughout this piece because it is the entire purpose of the piece to demonstrate how even some members of the autistic community don’t seem to have a clue what they’re talking about when it comes to autism.

I have seen Sam from Atypical described, multiple times as severely or moderately autistic. I was genuinely stunned when I read those words, more than once. There was a general consensus that Sam was far “lower functioning” than anyone on the particular social media site in question and – as someone who sat through Atypical feeling very strange at how familiar it all was – I could not understand how they had reached this conclusion.

Then ‘The Good Doctor’ aired and protests of a similar vein appeared: “there’s no way he could be a doctor, he’s far too low functioning”. In a way it’s a bitter contrast with the dramatic Hollywood speech from the opening episode: “We hire Shaun and we give hope to those people with limitations that those limitations are not what they think they are. That they do have a shot.”, because even within the autistic community, people are predeciding capabilities based on presentation and imposing limits. Admittedly this does not seem like a big deal, after all these are just two characters in television shows, but on closer examination it betrays a bigger problem. Shaun and Sam are considered low functioning by some people in the autistic community; from personal experience, I know those same attitudes and the dismissal that goes with it feature in real life.

I can present with some quite obvious autistic traits. Repetitive movements and lack of eye contact, as well as quite obvious sensory difficulties that have to be regulated in ways more obvious that ear plugs and a fidget often cause me to be isolated from other autistic people when I attend groups. Even as a relatively introverted autistic person who genuinely does not seek out much in the way of social involvement, I have to say it does bother me when people at autism groups move away from me. It feels like they’re uncomfortable with my behaviour. They certainly don’t bother to find the time to even try to get to know me.

Which is why, seeing this mirrored in the discussions around these two characters reminds me that at times parts of the autistic community are no more welcoming, accepting and understanding of a diverse range of autistic people than parts of the non-autistic community.

Recent surge of autism in television and films

I just finished watching and reviewing the first episode of ‘The Good Doctor’ but Shaun Murphy is far from the only autistic character to appear in a tv show, video game or film in the last year or two:

  • Christian Wolff – The Accountant (film)
  • Billy Cranston – Power Rangers (film)
  • Fiona Helbron – Elementary (TV)
  • Dean Simms – Claws (TV)
  • Julia – Sesame Street (TV)
  • All the characters – Pablo (TV)
  • Joe Hughes – The A Word (TV)
  • Sam Gardner – Atypical (TV)
  • Symmetra – Overwatch (VG)
  • Josh Sauchak – Watch Dogs 2 (VG)

That’s just the few I’m aware of and it’s not including books or the masses of characters that people claim are autistic (although really I ignore a lot of that because quite often a character is claimed as autistic for just being a bit different or a bit shy).

While this increase is a good thing – I struggle to be entirely optimistic that this comes from a place of genuine representation and diversity. It often seems like autism is just the “hot thing” in Hollywood and that it’s easy to play with and over-exaggerate the “savantism” that people still too frequently associate with autism. When you then start to look at other disabilities or conditions such as being Deaf or blind, or Cerebral Palsy, or learning disability, or ADHD or dyslexia, it starts to look like this isn’t a genuine push for diversity because there doesn’t appear to be the same type of increase of characters with conditions other than autism.

Perhaps this is a cynical way to look at things and maybe this will convert into a much better and diverse range of disabled characters in tv, films, video games and books. I really do hope so, but at the moment what sums it up quite well for me is something a friend of mine with Cerebral Palsy said when we were discussing Atypical and The Good Doctor – “I feel like a whiny git but sometimes I think about all this media attention on autism and wish they at least tried to do the same kind of thing for CP. That would be awesome for kids like me growing up. It feels like CP just isn’t glam enough or can’t be turned into a superpower”.

TL;DR – Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders

Reference: Van Wijngaarden-Cremers, P., van Eeten, E., Groen, W., Van Deurzen, P., Oosterling, I. and Van der Gaag, R. (2013). Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders: A Systematic Review and Meta-analysis. Journal of Autism and Developmental Disorders, 44(3), pp.627-635.


 

What?

A meta-analysis of studies into the effect of gender on autism. Current findings on whether there is a gender difference are inconsistent. To investigate further, the meta-analysis also looked at the effect of age in conjunction with gender.

 

How?

The meta-analysis looked at 22 studies which reported on gender differences in social and/or communication deficits, and differences in repetitive and stereotyped behaviour. Due to the variation in the studies the following data was used:

  • For social deficits, there were 4,783 test scores from males and 1,277 test score from females
  • For communication, there were 2,781 scores from males and 992 for females
  • For repetitive and stereotyped behaviour there were 2,093 scores from males and 781 scores from females.

 

Findings?

  • The meta-analysis found very few differences in symptom severity between males and female.
  • Symptom severity in communication and social behaviour was similar between genders, girls showed less restricted interests, behaviours and stereotypes than boys. This difference was not significant below the age of 6, only after.
  • There are three hypotheses for this difference:
    1. Females present with a different autism phenotype to males
    2. Female ASD patients with Intellectual Disability may be over-represented in the studies used, and stereotyped and repetitive behaviours are not ASD-specific – they also present in ID.
    3. Females with less severe social and communication deficits were misdiagnosed with other conditions and therefore not included in these studies.

 

Limitations?

May have been false-positive ASDs among patients with restricted interests and behaviours and stereotypes as there was an over identification of these symptoms as autistic traits when they are also common in some regularly developing children, and those with Intellectual Disability or who experienced deprivation.

Females with normal to high intelligence may have been missed from the meta-analysis.

Intellectual Disability as a confounder could not be controlled for with the data available.

 

What to take from this for practical use?

Girls and women may present differently in terms of social and communication difficulties.

Girls with normal or above intelligence may exhibit less repetitive behaviours, it may be more difficult to identify ASD traits.

Repetitive behaviours and interests alone are not ASD, they are equally common in other conditions and in some typically developing children.

Even if there are some presentation differences, women and girls with ASD do still have (and still require for diagnosis) social and communication difficulties, and repetitive interests, behaviours or thoughts.

TL;DR – Meeting the Common Core State Standards for Students with Autism

So many journal articles – once published – just sit on a shelf and never get read by the very people who might benefit from any practical information gained by the research. That’s without thinking about the additional barrier often posed by overly complicated language or terminology. Research needs to be done for a purpose, and that information needs to be disseminated. So this is my attempt at doing a bit of that.


Reference: Constable, S., Grossi, B., Moniz, A., & Ryan, L. (2013). ‘Meeting the Common Core State Standards for Students with Autism: The Challenge for Educators’, Teaching Exceptional Children, 45(3), 6-13.

Country of publication/research: USA

Topic: Adaptations which can help autistic students meet the Common Core State Standards. These are details about what students should know in English Language Arts and Mathematics by the end of K-12.

Summary of content:

  • The adjustments to the Elementary and Secondary Education Act (now called the Every Student Succeeds Act) means that many students with SEND in mainstream classrooms will be expected to meet the Common Core State Standards.
  • If teachers understand the three main psychological theories of autism (Theory of Mind, Executive Dysfunction, and Weak Central Coherence), they might be able to improve their teaching of these standards and personalise them to autistic students..
  • Includes brief discussions on how the three theories might cause difficulties in the area of English – with a focus on reading – and gives examples of students and difficulties involving these.
    • Theory of mind: May find it difficult to interpret the actions of others, may not understand the impact of own actions on others, may find it difficult to interpret thoughts, feelings and intentions of characters.
    • Executive dysfunction: May have difficulty in planning, organisation, initiation, working memory, inhibition or impulse control, time management, and developing and using new strategies.
    • Weak Central Coherence: May focus on a single aspect of something (a place, a topic, a piece of text, a picture, a documentary etc.) to the exclusion of other relevant details.
  • Gives examples of how these areas of difficulty might be supported:
    • Social Narratives (Social Stories and Comic Strip Conversations)
    • Naturalistic Interventions (teaching skills in the daily routine and using interests as motivation)
    • Peer-mediated instruction and intervention (using peers to explain and model behaviour and new skills)
    • Visual supports (such as a graphic organiser)
    • Prompting.

Biases or issues with method:

Rigid view of autism – makes sweeping generalisations such as autistic children “don’t understand how actions impact other people”.

Only considers autistic students who are already accessing the Curriculum with their mainstream peers.

What to take from this for practical use:

Social Narratives (google: Social Stories and Comic Strip Conversations) can help with developing Theory of Mind and understanding.

Visual Supports can and should be used to support executive dysfunction.

Don’t forget to ensure that peers are helping each other – overreliance on an adult is not of benefit to anyone.

“I don’t think low-functioning autism is true autism”

Yes – I have read that (more than once although the wording was slightly different) online from an autistic person.

The endless battles over functioning levels or different types of autism do not seem to be going away any time soon. It’s understandable because it is an incredibly difficult concept to understand. There were times when I was supporting students that I found it so hard to understand how we could share a diagnosis of Autism Spectrum Disorder. Combine that with research that seemed (at the time) to indicate identifiable differences in Aspergers and Autism and PDD-NOS, and it’s easy to understand why just lumping them all together under one umbrella term in the DSM-5 hasn’t gotten rid of the intense discussions.

Statements like the one I put in the title are not that common – but the fact that they exist indicates that not everyone is happy about the merging into a single diagnostic terminology. This particular statement actually appeared in a thread where some people were trying to argue that autism was an amazing, positive experience for everyone. Understandably some people disagreed. The discussion moved (as they often do) to the comparison between “high-functioning” and “low-functioning” autism – and out came the line “I don’t believe low-functioning autism is true autism”. I’ve seen many lines of argument within the autistic community – but not often do I see people effectively “undiagnosing” huge numbers of people from the spectrum just to drive their point home.

Whatever terms you do or do not want to use, autism is a spectrum. Sometimes or for some people, it’s a positive thing – little more than a difference in perceiving the world, for others it’s a negative thing that affects every part of their lives and makes them miserable. You often see these two different groups of people arguing about this very topic on autism message boards. Then there’s everyone in between who tend to avoid getting involved in the arguments.

You don’t get to tell people how they experience their condition, and you certainly don’t get to ignore a huge proportion of the autistic spectrum just to make your point.

Cuts, cuts, cuts…

I imagine that a similar situation is playing out in other countries around the world right now – but this week for me has been a week of watching the funding for services for people with special educational needs or disabilities get cut.

I left my job working in a school because I could no longer cope with the disaster that was the special educational needs department. Even with distance I am kept up-to-date with the chaos through my old colleagues (don’t join a WhatsApp with old work-mates if you want to be kept “in the dark” about this kind of stuff). I read as teaching assistants were cut, resource budgets were cut, as students were reassigned again and again. I read about students I used to work with displaying increasingly disregulated behaviour – lashing out, biting, hitting – as their whole academic world was restructured around them. I read about teaching assistants being told they were now responsible for two or three students with moderate to severe special educational needs. I read about old colleagues getting sick, getting hurt, developing mental health problems…

Then in my current job I watched it from another angle – I watched as the news unfolded about projects designed specifically for people with disabilities being cut to make room for more “relevant” work. I watched as the organisation released blog posts and twitter posts. I realised that the projects for those with disabilities was being cut because they didn’t bring with them big headlines; they didn’t get the kind of attention the organisation wanted.

It doesn’t take much searching online to discover story after story about the failings of the SEND system; about the cuts to services and projects designed for people with disabilities. If you really want to you can find pages of how schools are at breaking point – and how this is failing students. What makes this even harder to deal with is the fact that the UK is actually quite far ahead of many other places worldwide when it comes to special educational needs and disabilities – and then you hear stories about how much worse it is in those other places.

I saw things that made me angry during my time in special education – I dread to think how much worse things will get if these cuts continue.