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.

Advertisements

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 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 same 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.

Double standards confuse me…

I came across a post a while back that I was reminded of earlier today, that discussed various different trackers or alarms to alert people when people with autism or alzheimer’s or general dementia were at risk of wandering. The post itself was not what interested me the most – rather the comments in response to it were.

Most of the comments immediately jumped onto the idea that these gadgets would be misused by abusers, that people (particularly autistic people) who wander are usually trying to get away from abusive situations, that these gadgets were terrible and anyone who put one on their relative was a monster.

Right – so the response were an over-exaggeration absolutely but you can see the potential amongst a small group of people to abuse a gadget such as this.

My issue came with the fact that I had previously seen the same commenters defend Facilitated Communication as a completely valid means of communication that should be accepted – quoting ASAN’s “assuming competency” stance on the area of Facilitated Communication.

Yes that’s right – they were outraged by the existence of a gadget designed to prevent wandering which (as far as I can find – send me any news stories if you know any) has not been associated with any allegations of abuse, but are positively advocating for a disproven method of communication that not only has no empirical evidence going for it, and has been shown time and time again to almost always be the prompter doing the communicating (most studies come back with 100% rates for this), but has also been linked to false allegations of abuse, justifications for sexually abusing autistic people, and the murder of at least one child.

It’s good to be critical and think logically about the potentials for abuse – but to dismiss one thing simply for having the potential to be abusive and being completely accepting of another thing that has been proven to be abusive isn’t just hypocritical – it’s ridiculous.

Where are all these resources?

I’ve seen comments online a few times that basically say the same thing “There are loads of resources for low-functioning autistics/autistics with intellectual disabilities and nothing for the rest of us”. That’s usually then qualified by them not liking functioning labels and so on but you get the general idea.

What I want to know is where are all these resources for autistic people with intellectual disabilities? In my experience, there aren’t that many of them – particularly when it comes to things like books, lesson plan, and curriculum resources.

For the sake of this post, I’m going to use the three support levels for autism in the DSM-5 even though they’re not particularly useful for individuals, they serve the purpose for classifying books:

Support Level 1: There’s a lot of books and resources here for students, especially primary school students. There’s also a lot of books and resources aimed at this support level for interventions and strategies. There’s less for teenagers and for adults but you can find a range of autistic authors offering advice aimed at this support level.

Support Level 2: Again, a reasonable amount of books aimed at supporting students and children. Quite a lot of books on visual supports and strategies. This area is quite short of books for autistic teenagers and adults though. There are some autistic authors offering advice at this support level but it’s significantly less than support level 1.

Support Level 3: Very little in terms of books or resources for students. I looked for them for a long time. Books like Tasks Galore and the Intensive Interaction books definitely are useful for this support level, but beyond that it’s quite limited. Strangely enough this support level has a few more books for teenagers at level 2 – and more books on sex education and autism from what I’ve found (of course, SRE is vastly under-resourced so when I say more books I pretty much mean 5 or 6 books instead of 1 or 2). Almost nothing for adults.

When these people protest that there’s loads of resources and focus on “low functioning autism” and nothing for everyone else, I have to really wonder if they understand the full scale of the autistic spectrum. Maybe that’s the issue with the spectrum? The idea of a spectrum is too limited (this we know). All I can say is that when you’re supporting an individual with severe sensory issues, who struggles to functionally communicate, is greatly impaired in receptive communication, has enormous difficulties in fine and gross motor skills, will likely never engage with the National Curriculum (for students), and will need round the clock care more most if not all their life…then you do kind of wish that these claims of “loads of resources” were true. Unfortunately it’s not and people who need help are not getting the help they need and deserve.

Lack of empirical evidence

There are some places online within the autism community where it would appear that if you don’t follow that particular group’s hive mind towards certain methods like Rapid Prompting Method – you might as well just not go there.

For those who don’t know, Rapid Prompting Method is a method of communication devised by Soma Mukhopadhyay that helped teach her autistic son to communicate. It typically involves the use of letter board, keyboard or ipads. So what’s the problem? Well – it lacks any empirical data for actually working and the studies that have been done on it are few and far between (not to mentioned largely associated with the HALO Centre where RPM and Soma are based -you see the conflict of interest I’m sure). If you Google around you can find a number of blogs which make the claim that they are written independently by people who learned to type using RPM. That’s fine, but it’s not exactly evidence because I could upload a post telling you all that I am non-verbal and learn to communicate using RPM – it’s easy to lie on the internet, people do it every day. There are a few videos as well – and these are much better. Of the range of videos I’ve seen there are perhaps half that I am happy to accept as evidence of independent typing? A lot of the videos that I don’t consider good evidence involve a person holding and moving a letter board around as someone points, and many of those have multiple instances where the individual communicating points at a letter or multiple letters that aren’t read out before landing on the “right one”.

So dubious evidence at best, but it’s certainly got the potential to teach non-verbal people to communicate via pointing or typing. The other issue many other people have is with the similarities between RPM and Facilitated Communication, the latter of which has been linked to a wide range of abusive incidents and false allegations. It certainly seems a bit more difficult to manipulate what a person is communicating with RPM, but it’s not impossible. Given that a number of autistic people have been abused as a result of FC, and at least one boy was murdered, you would think that a cautious and collected view of RPM would be the norm?

Well – it is mostly, but there are absolutely some parts of the autism community who are not only adamanant that it works but who figuratively tear apart anyone who displays any kind of doubt over it. There’s always that same phrase of “assume competence”, and you know what – that’s a nice phrase but it doesn’t always work. Say for example we get someone using RPM who expresses a desire to be involved in a sexual relationship with the person who helps them communicate (an incident that has occured in FC), I want to be damn well sure that the person communicating is the person who thinks and feels that before I’m going to be okay with it.

For all the arguments from the autistic community about respecting everyone on the spectrum, when people argue so aggressively and rigidly about how RPM should be used with all non-verbal people I can’t help but feel like it’s saying that people only have value if they can produce long pieces of prose like Tito Mukhopadhyay and Ido Kedar. Everytime you bring up the fact that not everyone is going to be able to access the National Curriculum or will take a very long time to communicate past the basics of “I want” there’s always someone who crops up and says “Yes but it’s really hard to test the capability of autistic people, look at RPM and what the people who learnt to use it had to say…”, that’s great and everything but it sounds like you’re trying to brush off the fact that some autistic and/or non-verbal people also have severe or profound learning difficulties.

RPM isn’t proven, and even if it does work for some people it’s not going to work for all autistic people. It also needs a damn sight more empirical data before I accept it as a reliable method.