Parental Bias and Autism

To clarify inertia is defined as a difficulty starting, stopping or changing tasks.

I hope this helps Riz!

Ausomely Autistic said:

There is no such thing as ‘low functioning’, please do not use functioning labels

Riz said:

i was just diagnosed as having high functioning autism

This is a good example of why I think that this is problematic.

We are being told here that we shouldn't use the terminology of an official medical diagnosis.

More than that, we are being told that it doesn't exist.

I actually prefer to make my own mind up but this type of discourse concerns me a great deal and is unusual for this forum.

Riz said:

I understand that aspergers has highly negative associations, so I refuse to use it, but I haven't heard of this "low" and "high" functioning thing before. (And I find that it sounds quite rude and dehumanising

Hi Riz

I am glad you agree and you understand the history of this harmful language. I also agree that it can be confusing if your formal identification of being autistic uses these terms.

Riz said:

Would I refer to having lower support needs, or is there a middle ground between high and low support needs as I need support, which I don't get, but I don't need constant support if that makes sense. Please don't feel pressured into answering, tia- Riz :) 

Well, it depends. Obviously all humans needs and experiences are fluid, so trying to grade your support needs like this may not be helpful.

 What about if you used the term ‘support needs’ but then clarified what those needs by giving examples of situations you may need support with or find difficult?

For example, ‘I have several support needs, these include assistance using public transport as I can find these environments overwhelming’

Or ‘I need support with cooking and preparing meals as my brain is not suited to multi step tasks’

Or ‘I need support with administrative tasks as my brain is not suited to starting jobs that it finds boring/ I need support with administration as I experience experience inertia (difficulty starting, changing, stopping tasks).

 I hope this explanation and examples of potential support needs are helpful!

Thank you for being so considerate.

Hi, what should I use instead as i was just diagnosed as having high functioning autism- but the lady said i would've been diagnosed with Aspergers if it was some time ago. I understand that aspergers has highly negative associations, so I refuse to use it, but I haven't heard of this "low" and "high" functioning thing before. (And I find that it sounds quite rude and dehumanising :( ) Would I refer to having lower support needs, or is there a middle ground between high and low support needs as I need support, which I don't get, but I don't need constant support if that makes sense. Please don't feel pressured into answering, tia- Riz :) 

Team games as a form of endless torture, for someone with the gross motor skills of a newborn giraffe! Why did they not just leave me to run around a field on my own? I would have been happy and the people forced to have me on their teams would have been happy. 

Ha, yes, I had zero interest in PE and was consistently dreadful at it. I think being rubbish at it came first but not wanting to do it certainly didn't help me improve!

I am merely quoting the figures in a paper I read a few months ago. I imagine that the figures were combined from other recent studies and averaged. While I am aware of the limitations of all methods of measuring intelligence, the figures I described are part of a general trend. A trend which is quite consistent and logical.  As more people with 'less obvious' autism are being diagnosed, the proportion of the autistic population with intellectual disability has dropped, and will continue to drop. In contrast to the the recent figure of 38%, in the early 1990s the vast majority of autistics were deemed to be of below average intelligence, at around 70%.

1. Teachers.

2. Training courses for teachers. They are all probably aware of the more extreme cases. E.g That kid definitely has autism (I don't know if this is rude to right, sorry if it is) or adhd. but I think you need to raise awareness in teachers that autism comes in different forms and it's not just the extremes. If that makes sense. Also training courses for doctors so they are actually aware about neurodiversity and a bunch of other issues. I am pretty sure medicine all comes from a white male neurotypical perspective so if you don't meet those criteria then you are going to have problems.

The problem is this is already adding more pressure onto teachers who have already got to worry about parents emailling them about kids and so on, and not being paid enough which is honestly extremely silly. The whole purpose of teachers is to raise the next generation, the future technology creators, the future artists and the government doesn't really care about them. If the government doesn't care about them that must mean they don't really care about our country. I am not entirely sure how the government works but I am pretty sure the education secretary is a joke position that politicians go into just to make a few minor changes to say they have done something.

Sorry. How is the intelligence being measured, because there are lots of different types of intelligence, puzzles, visual exercises, memory, so someone might score badly on one but very well on another? Or is it taken as an average among all types of intelligence. There may also be a problem with the environment the person is born into. Is autism spread evenly among all socio-economic backgrounds (don't know if this is the right phrase) or is it more common in some then others? This might then affect how the intelligence is measured. E.g Richer parents have more access to buying puzzles and so on so kids grow up to be better at solving puzzles. I don't really know.

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

TBH I think my kid is aces, he's his own kind of specialist and will get on just fine if folk would only let him be himself, my only real concern is that he's going to be as misunderstood and mistreated by NT society as I have been.

That’s quite worrying, but I am sure you will be great at helping your child advocate for themselves!

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

If nothing else it is at least why I don't talk about my kid here like that, I don't ask for advice here because I already know, and when I have mentioned him here it's never been in terms of defecits.

TBH I think my kid is aces, he's his own kind of specialist and will get on just fine if folk would only let him be himself, my only real concern is that he's going to be as misunderstood and mistreated by NT society as I have been.

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

I think that's why we don't get a lot of autistic parents (parents that are autistic) or parent's that admit they are likely also autistic in the drop-in posts here (we have autistic parents in the community long term) because unlike an autism parent an autistic parent already knows or has some inkling what they are looking at and dealing with in their kids because they have their own history of experiences to draw from.

Yes I agree! It’s a shame though because we could give advice and belonging for some autistic parents. There is a charity run by autistic parents for autistic parents:

https://www.autisticparentsuk.org/

Ausomely Autistic said:

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).

Indeed that's why as I said of NT's sadly:

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

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.

I think that's why we don't get a lot of autistic parents (parents that are autistic) or parent's that admit they are likely also autistic in the drop-in posts here (we have autistic parents in the community long term but rarely as single thread drop-ins) because unlike an autism parent an autistic parent already knows or has some inkling what they are looking at and dealing with in their kids because they have their own history of experiences to draw from.
If nothing else it is at least why I don't talk about my kid here like that, I don't ask for advice here because I already know, and when I have mentioned him here it's never been in terms of defecits.

🐝 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.

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

Yes absolutely and using language such as ‘support needs’ and then giving examples of specific needs is a great and respectful way of describing the variations in human abilities. I am not denying that labels are not helpful, all I aim to convey is that we should be using respectful language to describe people and their experiences, especially our neurokin who may experience prejudice every day.

We know how harmful prejudice is as a small autistic community, and we should avoiding creating more of this with any other member of the wider autistic community.

Thank you for articulating this point.