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.
I must admit I am quite baffled by two instances I’ve seen in less that 24 hours where people seemed (to me) to get irrationally upset about other people earning money for the products they make. One was over an app – someone in a thread had asked whether the app was worth subscribing too and a few responders seemed very angry about the fact that creator of the app was earning money from the app. They seemed to have this internal standard of what was an appropriate amount of money for someone to earn from this type of thing, and after that amount it was unreasonable.
I also came across a post where the The Girl with the Curly Hair Project (so Alis Rowe) was defending the fact that she earnt money through the TGwCHP – explaining that it wasn’t a charity but a social enterprise. Which got me wondering, who made her feel like she had to justify herself in the first place? She is providing products and services, and should be paid for those products and services. If you don’t want to access them – then don’t pay for them.
I’ve seen it online in a few other autism forums and threads as well – although never quite so explicit – from both families and autistic people. That apps should be free, resources should be free, books should be free (I should be clear here – I am not referring to any services that should be covered under insurance or by the NHS and they are somehow trying to get out of providing – I’m talking about things provided by individuals or small groups of people). People complain about not being able to do x, y or z; then when resources or books are suggested turn around and say they’re not paying for it.
I’m not going into the debate about the cost of resources for special educational needs or disabilities in this thread – we can all agree that a lot of them are far too high and are exploitative in price – but where did this idea come from that we should receive products and services for free? People wrote those books, made those resources, designed and drafted and spent a long time creating these items. They are as entitled to ask for a price for it as you are entitled not to buy it. The maker of the app I mentioned is well within his rights to ask for money for the app that he spent a lot of time making; just as Alis Rowe is well within her rights to charge for the products, resources, and time that she spends on her social enterprise.
Maybe it’s because there are so many things available for free (think of all the free apps that exist or of all the blogs offering advice for free) that people seem to have this skewed idea that they are entitled to things for free? Once I get around to finishing writing my books, you can guarantee that I’m not going to just give them away for free – because I spent a lot of time and effort to make those products so I will feel more than justified in charging what I consider to be a reasonable price for them. Just as anyone else will be completely justified in choosing not to buy it.
I was far more successful at interview than I thought and in the time since my last post, I have accepted a job offer to work for a charity helping young people and adults with autism and learning difficulties to access public transport and the community.
Now it’s probably unsurprising given the core issues that many autistic people experience, but the idea of changing from a job that I was “comfortable” in (although not necessarily happy) to a completely new environment and job role.
I can feel the anxiety just beneath the surface – kept away by my focus on essays to write. The problem is I can’t quite focus on the essay either. There’s all these thoughts about my job and my future in education that distract me if I don’t force myself to stay focused. I thought maybe it would help to do some reading on how to help autistic people with learning disabilities access public transport.
There’s not much on it really. I was a bit surprised to be honest. I know there’s always complaints from autistic people online about lack of resources – but I know that there are actually quite a few books out there for autistic adults because I’ve got them. However, books for adults with autism and learning disabilities, and how to help them access the community and public transport? Not so much in the way of books or resources. I’m starting to realise that for all the complaints you find – there are a lot more resources for autistic children, young people and adults who would have traditionally been considered “high-functioning”. For everyone else? Not so much.
I suppose after I have some experience perhaps I will have to fill that gap and write some resources.