Parental Bias and Autism

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

And from the way they phrase their posts most are clearly expecting answers "how to deal with child regressing" from a neurotypical perspective, tbh I don't wish ill to them, but I don't think well of them either because they clearly think of us as problems to be managed rather than people with problems to be managed, or people to stick around and get to know no matter how welcome we try to make them.

I absolutely agree! These kinds of posts make me feel very uncomfortable and concerned by the fact the parents obviously do not understand autistic experience from autistic perspectives and the potential that their child might be experiencing burnout (and therefore the impact this has on the autistic child).

You also described my school years pretty much, except because I have a dopamine battle I was mixed academically, anything that caught my interest I excelled in, art, history, English, science, and RE, I did very well in, but and anything that didn't interest me like maths, geography, home ec', design and tech, and PE, fell pathetically by the wayside.

Hi Bees

Thank you very much for your very articulate point, you have perfectly described why functioning labels should be scrapped and are harmful to our autistic community.

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

I think it's time we dropped functioning levels and instead recognised the fluidity of how much support we need individually.

Very well conveyed, I completely agree! Like you say we need to recognise fluidity in autistic experience, no human remains static in their lifetime!

If you feel as passionately about the harm of these labels as I do (you seem too!), you may enjoy this spoken word poem by autistic poet Callum Brazzo:

https://youtu.be/Pd8uPFEnnPo?si=_hNL07o0SBZCSquO

I'll tell you what else I find "interesting" is that the active members are actually autistic people looking for community, and the drop-in members appear to be non-autistic people looking for information that the content of their posts would imply they are seeking from qualified therapists, teachers, and the like.  And from the way they phrase their posts most are clearly expecting answers "how to deal with child regressing" from a neurotypical perspective, tbh I don't wish ill to them, but I don't think well of them either because they clearly think of us as problems to be managed rather than people with problems to be managed, or people to stick around and get to know no matter how welcome we try to make them.

It's actually starkly obvious when a new NAS-bunch-of-numbers is autistic or neurotypical themself because of the type of post they drop here. The NT tourists aren't looking for community here like the actually autistic people are, and that is symptomatic of the wider societal problem: NT's don't want to know us as people. They still veiw us as puzzles to be solved.
And tbh I'm largely done with trying to talk to them if the reply would take too long because I don't think they value me as an autistic person they just view me and my input as a tool to help "fix" their "broken" autistic kid. If I tell them anything it's only for the benefit of the child.

Ausomely Autistic said:

People harmfully and wrongly misconstrue some autistic people as ‘low functioning’ if they have co-occurring needs such as apraxia, learning disability or epilepsy etc. No human deserves to be defined and identified using functioning labels, our worth is not defined by how much we can contribute to society.

I agree with this point.
But I wanna add that I find functioning is only a helpful IF it is conceptually recognised as a fluid scale (how it is used medically at current as a fixed scale is when it is misguided, assumptive, and harmful) because there are better and worse days even if you don't have a debilitating co-occuring condition. Which is actually true for neurotypicals too just we seem to experience it magnified (the NT doctors are too keen to point out the ways we are deficient and errant from neurotypicals they never focus on our human similarities or strengths of difference).

I do find it an interesting point though even if you remove the issue of functioning labels because as Peter says those %40+ approx are just thse who are diagnosed, it doesn't include those who mask or get missed from diagnosis for whatever reason, the invisible undetected autistic population is no doubt massive s the majority of autistic people would seem to be so-called "highter functioning", and yet we all have our struggles. I think my own parents expected me to just "tough it out" as a kid and teenager because I was "okay" academically, not disruptive in class, and bottled my anxiety and depression hidden from parents and teachers until I'd have explosive meltdowns and be labelled dramatic.

I think it's time we dropped functioning levels and instead recognised the fluidity of how much support we need individually. Because when my mental health is good and my work load is manageable I do okay now, I haven't had a meltdown in 8 months, I just need someone to pick up a little slack in a few daily household tasks and to remind me about up-comming stuff. When I was depressed though I couldn't even dress myself let alone go to work and averaged about 3 meltdowns a week. I'm the same autistic person I've always been so saying I have one level of functioning is utter rubbish, I'd like to throw whoever invented static functioning lables and set ASD "levels" in the flipping bin.

Martin said:

The problem is that human beings vary hugely in abilities and highlighting this with labels is, at the very least, concise and can be helpful in some circumstances. Better labelling in the case of so many institutions which aim support at 'autistics and people with learning difficulties' would be helpful, as it conflates two sets of people with a rather limited overlap and widely varying needs.

 Unfortunately Martin because they are seen as static I'd never trust a peice of paper or another person with my diagnosis, level, or functioning label to accurately explain my support needs. I'd honestly rather just try and mask long enough to get in the door places and then drop what I need on people in my own time as and when I need it. I don't trust any neurotypical to treat me how I need nor deserve as far as I can throw them, ignorance is their default setting: they are not in our shoes, not in our world and only ever "know" anything about it 2nd and 3rd hand.

If I remember correctly, some of the latest figures on intelligence in autistic people (difficult to measure accurately!) suggest 40% above average intelligence, 38% below and 22% around the average. This suggests that autistic people tend to cluster towards either extreme, rather than towards the middle ground.

The nomenclature surrounding autism is in great need of some improved clarity. To me, there appear to be three major groups among autists - 1) those who function, or appear to, in neurotypical society, at whatever  resultant cost this may have in exhaustion and mental ill health, 2) those who cannot function effectively in neurotypical society due to severe anxiety, inability to vocalise etc., but who are of average or above average intelligence, and 3) those who cannot function effectively in neurotypical society due to the interplay of intellectual disability and autism. To pretend that these three groups, and I know it is an oversimplification, have the same abilities or support needs is simply futile.

The issue- aside from the fact that functioning labels aren't helpful- is that people believe if that if THEY can't see our struggles, those struggles don't exist.

A child who is able to attend a mainstream school by masking all day, who has excellent grades but no friends, will be under a great deal of stress. But because it's being suppressed all the time, nobody realises anything is wrong, and that child might not have the emotional maturity to describe what the problem is- and even if they do, their perception of the world is often dismissed as them making a fuss over nothing. I know this, because I WAS that child.

I don't know how we fix it. Better understanding of the many ways autism can present itself would help, particularly in schools.

There is no such thing as ‘low functioning’, please do not use functioning labels when speaking about fellow members of our autistic community, especially our younger neurokin. It’s dehumanising and inaccurate.

People harmfully and wrongly misconstrue some autistic people as ‘low functioning’ if they have co-occurring needs such as apraxia, learning disability or epilepsy etc. No human deserves to be defined and identified using functioning labels, our worth is not defined by how much we can contribute to society.

Please use the term ‘support needs’ instead and list what specific needs the autistic person you are talking about has. 

Please read about the harm that ensues from using functioning labels to describe our autistic community:

https://www.autisticality.co.uk/functioning-labels