#ActuallyAutistic trending

[gorgeousjewel]

I feel I will be flamed for this but I really would like to genuinely understand.

The hashtag #ActuallyAutistic is trending this evening and I think I know what it means - it's for those who have had a proper diagnosis and are a supportive and collective group. (please correct me if I'm wrong)

What I don't understand is what do people who use this hashtag want to achieve?

What are others doing wrong (beyond funding, support, recognition etc..)?

What can I and others do better?

Do #uthenticallyAutistic follows think that there are clear divisions and that those described as "Neurotypical" have an easy/different life?

Genuinely interested and would love to know more - please help me understand

@AlfonsoTheMango
But it is a disability- defined as such by the autistic society. So as much as you can say NT people need to change their attitude (you missed out some in the sentence there) they aren’t wrong to see it as a disability.

And perhaps this study will give a greater insight into the differences within the disability. But if people are refusing to take part then not a lot will change.

Meanwhile the severely autistic people get looked over
Your definition of severely autistic may differ to others. Perhaps you could be clearer please.

^^ the young people I support who require 2-1 care. As much as the actually autism community condemn functioning labels they are very useful in care.

@AlfonsoTheMango

I''m not disabled by my condition, ie my condition is not a problem - I am disabled by NTs' attitude toward my condition. I can''t change my condition but NTs can change their attitudes.

Do you think that's true of everyone who is autistic?

@inmyslippers

Meanwhile the severely autistic people get looked over Your definition of severely autistic may differ to others. Perhaps you could be clearer please.

^^ the young people I support who require 2-1 care. As much as the actually autism community condemn functioning labels they are very useful in care.

I feel guilty talking about my autism with a friend. Her 7 year old doesn't speak and wears nappies. She says he will never live independently. I think there should be some kind of scale but how you would go about that I don't know. I was diagnosed "autistic". My mum says I'm high functioning or have Asperger . To be that says I only have autism a little.

@RevolvingPivot it's tricky isn't it, you should not feel guilty at all but we are human and sometimes it can feel that way in these kind of situations. I do think those who will never live independently are often silenced, not heard, or whatever else because of attitudes like well if the world was more accepting it would be fine, or when parents, who are often the only voice in this world are told to shut up as they aren't autistic themselves. Its highly complex yet some seem to think they can speak for all (not on this thread btw).

A consequence of identifying as autistic rather than being diagnosed as autistic is that you are identifying with the symptoms/behaviours of autism. It is these that grant you access to the group and keep you there. Therefore any request for help with these, eg how to deal with sensory issues or blend in in the work place, is met with aggression as treacherous. Same with the what they call 'pathologisation', hence the attack on this study - it threatens their position. But they also seem to be individuals living independently.

And try suggesting parents, siblings or carers can have a very difficult time dealing with autistic behaviours... I've seen sibling support groups piled on even though some of those have had to go and live with their relatives for their safety.

@Tibtom

A consequence of identifying as autistic rather than being diagnosed as autistic is that you are identifying with the symptoms/behaviours of autism. It is these that grant you access to the group and keep you there. Therefore any request for help with these, eg how to deal with sensory issues or blend in in the work place, is met with aggression as treacherous. Same with the what they call 'pathologisation', hence the attack on this study - it threatens their position. But they also seem to be individuals living independently.

And try suggesting parents, siblings or carers can have a very difficult time dealing with autistic behaviours... I've seen sibling support groups piled on even though some of those have had to go and live with their relatives for their safety.

In many cases the family has an equally difficult time … as the autistic person doesn’t know that they’re autistic. They just react to the environment around them. It’s not a ‘blessing’. They’re not ‘special children’ etc etc. It’s very difficult and debilitating. The very big gulf in needs and ability all coming under one label (as PP have mentioned) is a big problem. Ultimately the labels ‘high’ and ‘low’ functioning have been criticised because the former are deemed to not need support but IMO the problem is not the label. It’s that necessary services have been cut back. And people are left fighting over the scraps , over things like labels when really what we should be fighting for is more provision across the board. Both ‘high’ and ‘low’ need help. Acknowledging that the latter need more and this will be ongoing throughout their lifetime doesn’t mean that the former don’t.

The research will lead to us being genetically screened out because the autistic narrative is firmly set by the parents of the so called 'severely autistic' children. The rest of us - the majority of autistic people - don't count.

If this was being done to gay people, black people, Chinese people etc. there'd be hell on, but we're classed as fair game and something to be eradicated. I'm not a cockroach, I'm a human being.

@hiplip

The research will lead to us being genetically screened out because the autistic narrative is firmly set by the parents of the so called 'severely autistic' children. The rest of us - the majority of autistic people - don't count.

If this was being done to gay people, black people, Chinese people etc. there'd be hell on, but we're classed as fair game and something to be eradicated. I'm not a cockroach, I'm a human being.

There's nothing to suggest that's the case at all regarding this particular research. Also I don't think that's true at all, the majority of people if asked to describe the traits of autism would probably largely describe the majority, and not the other way round. Lots of people are surprised that autism can have such an impact on someone's life that they require 1 to 1 care, are non verbal and potentially incontinent etc.

To say that autism will be genetically screened out is quite a bold statement.
If we are to believe evil NT people want 1 in 54 (if not more) people eradicated from this earth then that’s quite something

@inmyslippers

Actually autistic crowd are the very vocal autism police. They like to bicker over functioning labels. Aba therapy and call everyone nazis. I have autism but don't like to associate with them

Same. It doesnt actually mean an official diagnosis either. Youll get banned from these groups quick smart if you question the validity of self diagnosis, or use the word aspergers or say that functioning labels are useful. Also god forbid youre an autism mum

I'm on the waiting list for a diagnostic appointment (I've passed through all the screeners to the point university are happy to support me as if I have the diagnosis) and I have DD2 who is waiting for school to restart for an in-class observation as the final stage of her diagnostic process.

I avoid the online autistic communities like mad because the pile ons I've seen onto people are crazy. It goes from jumping onto people who make the error of referring to someone as "having autism" right the way through the "Aspergers" issue and it then snowballs into some horrendous attacks on parents who have children at the very severe end of the spectrum who are non-verbal and cannot speak for themselves - for daring to advocate for their child.

There was a thread on here recently where someone posted they were struggling to deal with their autistic brother's behaviour - and they were savaged from some quarters for daring to express that sometimes their sibling irritated the fuck out of them... sometimes siblings DO irritate the fuck out of you - that's part of the whole sibling thing. Likewise sometimes I do find DD2's sensory stims quite wearing (same as I find DD1's incessant talking painful by the end of a bad day) - it's part of being human that other humans can be incredibly hard to deal with at times!

Personally I think that the whole spectrum concept, rather than the original Aspergers/Autism split is making life incredibly difficult for families who have a member on the more affected end of the spectrum.

I tend to go by the rule of asking the person in question how they want to refer to themselves - do they prefer identity first or person first language and remember that it's a huge spectrum and things that can be really difficult for some to deal with (I find touch incredibly overwhelming at times) can be something that someone else finds very soothing (unfortunately for me with my tactile defensiveness... DD2 is a tactile sensory seeker - I suppress my needs to meet hers!). Likewise someone with PDA needs a much different setup in terms of strategies to support and letting them feel in control to manage their anxiety compared to someone who absolutely needs a routine and structure to hook their lives upon.

TLDR: People are different. Autistic people are people and people are different. Don't be a dick to other people.

I don't like 'autism mum' though - you are parenting a child, not a condition. 'mum' is sufficient.

@Tibtom

I don't like 'autism mum' though - you are parenting a child, not a condition. 'mum' is sufficient.

Some choose to call themselves that, I agree that if someone else is referring to them as that then that's wrong as it might not be how they want to identify, but do you think you should be gatekeeping the term for those who wish to use it?

[quote Excelthetube]@AlfonsoTheMango
But it is a disability- defined as such by the autistic society. So as much as you can say NT people need to change their attitude (you missed out some in the sentence there) they aren’t wrong to see it as a disability.

And perhaps this study will give a greater insight into the differences within the disability. But if people are refusing to take part then not a lot will change.[/quote]
Thank you but I don't need anyone to correct what I said, which was clear "I''m not disabled by my condition, ie my condition is not a problem - I am disabled by NTs' attitude toward my condition. I can''t change my condition but NTs can change their attitudes."

I referred to the post that called my disability "a problem" which is quite insulting. And having autistic people take place in a study will not change NTs' atttitudes or ignorance, as displayed in your post.

Peacrock it is up to them if they want to call themselves that. I don't mean to say they shouldn't, just that I don't like it. But I think by saying 'autism mum' it opens you up to having the 'autism' aspect of your parenting critiqued and criticised and others thinking they have more authority to speak on behalf of your child and family than you.

take part not take place!

@hiplip

The research will lead to us being genetically screened out because the autistic narrative is firmly set by the parents of the so called 'severely autistic' children. The rest of us - the majority of autistic people - don't count.

If this was being done to gay people, black people, Chinese people etc. there'd be hell on, but we're classed as fair game and something to be eradicated. I'm not a cockroach, I'm a human being.

People with Down’s syndrome, leukaemia and cystic fibrosis are screened out as well. Is that a bad thing?

Neither my nor my DP are NT. We are both mild/high functioning/whatever. We have managed but it’s not easy. We are very lucky in that our specific areas of hyper focus are well renumerated.

But for all the money in the world I hope and pray that our future children (if we have any) aren’t like us. If there was genetic screening we’d be the first in the queue.

@AlfonsoTheMango
If you’re going to reply/refer to a post. Then quote the post. Makes it much easier for people to understand what you’re trying to say. I am not a mind reader.

HTH

What about self ID on behalf of your child?

Waiting lists for assessment for diagnosis is 2 years plus. They might then be given another year or two "watch and wait". Or not be showing enough autistic traits to "qualify".

If people who self ID shouldn't be given any accommodations then what about these children, I've heard of parents fighting for 8 years or more to get their child diagnosed.

They're left in a horrible limbo where they are meant to say what?

@nanbread

What about self ID on behalf of your child?

Waiting lists for assessment for diagnosis is 2 years plus. They might then be given another year or two "watch and wait". Or not be showing enough autistic traits to "qualify".

If people who self ID shouldn't be given any accommodations then what about these children, I've heard of parents fighting for 8 years or more to get their child diagnosed.

They're left in a horrible limbo where they are meant to say what?

If they have been assessed by professionals and don’t qualify then they’re unlikely to be autistic. Mistakes have been made but there are also parents whose children have had 2 assessments (by different people) and not been found autistic.

The solution to people fighting for years for diagnosis is to increase provision and make the pathway widely available, not to allow anyone and everyone to self ID. This isn’t just because you wouldn’t be able to tell who would genuinely receive a diagnosis. Or because the people who don’t ‘seem’ to have issues won’t be believed without an official diagnosis anyway. But because there are other conditions whose presentation overlaps with those of autism. Emotional dysregulation for example is present in both autism in ADD.

*and ADD

But for all the money in the world I hope and pray that our future children (if we have any) aren’t like us. If there was genetic screening we’d be the first in the queue.

It might not even amount to screening out. They are looking at epigenetics. It may be more that you don't take certain medication during pregnancy.

@nanbread

What about self ID on behalf of your child?

Waiting lists for assessment for diagnosis is 2 years plus. They might then be given another year or two "watch and wait". Or not be showing enough autistic traits to "qualify".

If people who self ID shouldn't be given any accommodations then what about these children, I've heard of parents fighting for 8 years or more to get their child diagnosed.

They're left in a horrible limbo where they are meant to say what?

Educational accommodations are based on need not diagnosis as is DLA.

If a child doesn't qualify for a diagnosis then why do you think they should receive one?

@hiplip

The research will lead to us being genetically screened out because the autistic narrative is firmly set by the parents of the so called 'severely autistic' children. The rest of us - the majority of autistic people - don't count.

If this was being done to gay people, black people, Chinese people etc. there'd be hell on, but we're classed as fair game and something to be eradicated. I'm not a cockroach, I'm a human being.

Agree @hiplip.

Who knows what will happen with this data and what other organisations/groups/individuals may use it to justify. That's the concern.

I suppose a lot of the disagreement on this thread comes down to one thing:

• whether you are of the view that autism is a neurotype (which many are, likely many unrecognised), and that within this neurotype some individuals also have learning disabilities, as does the non-autistic population, but the autistic population may currently look more heavily weighted than the non-autistic population towards including learning disability, because of diagnostic process / assumptions / medicalisation / prejudice.

• or whether you are of the view that autism is a medical condition. Most autistic people today would disagree with this, I think.

Either way, many autistic folk would currently consider autism a disability because society makes it so, not our brains.

And this study isn't going to do anything to help that.