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

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.

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.

“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.

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.

Positive Stereotypes

There seems to be a slight shift recently in the types of news stories involving autistic people. Granted there are still a significant number that focus on everything negative associated with autism, but there’s a different type of article beginning to make an appearance.

The stereotype of autism and STEM.

This upsurge could perhaps be partially attributed to Neurotribes and the discussions of the Silicon Valley that came out of it. Perhaps it’s something else entirely. Whatever caused it, there are now a number of articles about how amazing autistic people are in the STEM fields and how it would serve companies well to follow in the vision of Microsoft and hire more autistic people. Quite a few commenters online have argued that this is a good thing and how we as an autistic community should be supporting this new and positive stereotype.

The problem is, it’s only a positive stereotype if you happen to even vaguely fit the stereotype. So for all the autistic people who don’t excel in STEM subjects, what’s going to happen if this stereotype takes hold? It’s going to be the same thing of people expecting you to be a certain way – like the Rainman problem but from another angle. Other minorities do not seem especially fond of positive stereotypes associated with them – so I don’t see why the autistic community should be either.

There seems to be a real problem with views of autism (both within and outside of the autistic community) being one extreme or the other. Either we seem to only focus on autistic people who have great difficulties in every aspect of daily life and ignore everyone else. Or we focus on those who are in good STEM jobs and who are successful in their daily lives (with little focus on the difficulties they have) and ignore everyone else. So the people in the middle get ignored a lot either way. I don’t think moving from one stereotype to another is ever going to be a good thing, and I think the focus should remain on moving forward in showing just how diverse the autistic spectrum is.