Anyone else noticing the uptick in open hostility towards people with ASD?

[FFSakeDrinkSake]

As the title says. It feels like it's open season recently. In the last few weeks alone I've seen many threads questioning the validity of Asd, the credentials of those diagnosing the condition, the 'explosion' of diagnosis', the 'fact' that you qualify for extra benefits if you are autistic and/or have ADHD, the apparent drain on resources kids with ASD have on the educational sector depriving others and most recently the idea that someone (self diagnosed) can 'outgrow' autism. Most of which contain the worst misinformation about what we're trying to deal with on a daily basis and making it sound like we're just trying to .. i dont even know tbh.. scam our way through life?

Disclaimer NATAAT.

@WaitingForMojo where exactly have i stated that my dc needs no more care than my other dc? I did in fact state that i treat them no differently to my other dc and raise them with the same behaviour expectations etc! Stop trying to twist my words to suit your narrative!

But if you treat them no differently that means you give the same care to them all. So do they all have high level care needs that you meet or does only one have high level care needs and you don't meet those needs? I am finding it confusing what you are saying.

A certain diagnosis mentioned is caused by environmental factors.

Suddenly the ableism in some comments makes more sense.

I don’t understand. You’ll have to be a bit more direct.

@SummerDays2020 you are being deliberately obtuse but i will bite! No i raise them all with the same expectations of behaviour etc! So i will not punish my NT for a certain form of behaviour while excusing my ND children for it " because they are autistic"

I haven't particularly noticed this, but I have noticed a lot of, for want of a better word, aggression, from sections of the adult autism community (self-indentified or diagnosed).

My 16 year old has just been awarded PIP, I don't need anyone downplaying his difficulties, whether from a 'everyone has autism nowadays ' pov, or from arguing that all of his difficulties are due to society.

So am I. Having the same expectations of a child who has high care needs, and treating them no differently than a non disabled child sounds a bit ableist and unfair?

It sounds like you are saying you have a very disabled dc who needs a lot of care as a result, but you expect them to function as though they didn’t have those needs?

Nobody’s twisting anything and i don’t have an agenda 🤷‍♀️

Unless wanting equitable treatment for neurodivergent people is an agenda, in which case i absolutely do!

edited - link didn’t work!

I don't make autism or adhd an excuse for bad behaviour in exactly the same way my parents never allowed my db to be a brat because he spent many months in hospital or having treatment!

Oh dear.

@WaitingForMojo ah so now instead of accusing me of lying you resort to sarcasm! You crack on with your victim mentality and i will go about my day! Have a nice day 👋🏻

A couple of points here:

1. Not only is autism a spectrum, but it is a consistently moving spectrum depending on a number of factors influencing the person, which can include sensory input, stress, physical, social and emotional expectations. You may find an autistic person is fine in one situation, but replicate it and add in a different sensory input, for example doing something at night that is usually done in the day, and this may be completely untenable for them.
2. Many autistic people have no learning difficulties, while many do have difficulties. These can range from memory problems, executive function problems, and can also be dynamic and change depending on, yes, you’ve guessed it, sensory input, stress, physical, social and emotional expectations.
3. DLA and PIP forms are not fit for purpose for assessing autistic people or those with other neurodivergencies. They also fail to take into account that these are dynamic disabilities.
4. This thread is depressing. I’d wager that most of those saying parents are “chasing a diagnosis” fail to understand masking and less obvious signs of stress and burnout of autistic people.
5. Non verbal people can communicate… there are a few outstanding books written by non-verbal autistics that give insight into this - I’d love for more people to have read them.
6. Non-verbal or verbal, learning difficulties, comorbidities aside, there is a clear uptick in derogatory language on here aimed at those who are ND. I attempt to educate where I can, but I really think there will always be those that refuse to accept that their knowledge isn’t sufficient to have an educated opinion on this.

I'm not being obtuse, at all. I just don't think you're being very clear. So what you are saying is you treat them the same in terms of expectations of behaviour but you don't treat them the same in the case of the needs they have due to any disability they may have?

I worry hugely about my 8 year old sons future precisely due to this issue. He was diagnosed with Autism and various other conditions at 4, and has complex needs. Although as yet we have not directly experienced this kind of hostility, the fact that people are still trotting out the old 'just naughty kids/didn't happen in my day' bullshit shows that society has very little understanding of neurodivergence, and prejudice exists everywhere. Kindness and understanding costs nothing, but apparently it's still too high a price for many.

Someone can only be a victim when they are victimised... so maybe stop trotting out ableist tropes?

You clearly love your childen, but maybe extend the empathy to others.

Do you have any names of the books written by some non-verbal people?

Wow, having the same expectations of your autistic child as your non-autistic child is a surefire way to end up with a chronically depressed adult child who has no self esteem or ability to meet their needs.

@SummerDays2020

The reason I jump by Naoki Higashida
The follow up to it is
Fall Down 7 Times Get Up 8
Beyond the silence Tito Rajarshi
The Talking fingers series

I’m really confused by this. Overall my sons behaviour at main stream school was classed as A*

However my son who has complex needs and ASD would bang his head on table and draw blood when he needed to re regulate - if my NT daughter did that I would be really concerned and think she was having a nervous break down. With my son I make sure that he is in room with low stimulus. At school they removed him from any harm.

My son talks to himself - if it were his sister I would ask her to be quiet but with him it’s a process of thoughts that he has to do.

Or a few years ago my son would periodically hum in the cinema - this was a sensory need and OT told me to give him a chew or bubble gum before the film.

Or he refused to shake hands with a tall black man at church. After discussions with OT etc for advice we realised that he had only met short black men so we immersed him into saying ‘hello’ to people who were both tall and black.

or he refused to go past a tree because it had fronds - I picked my battles and crossed the road.

All these occasions required thought and adaptation. For instance if a NY kid screams getting on a bus that might be just naughty - with my son he would refuse ( still does) or gets on and off at every stop because he refuses to be brushed.

Sorry but you can’t just get on with things - or treat them as if they are just like any other adult or child etc

I mean if my son suddenly decides there is too much street clutter on a road - he won’t walk down it and it a square causes him to breakdown because people walk in all directions we remove him.

My son has gone into shut down twice and it’s petrifying. So I will do everything to avoid that. He looks like a gargoyle stature with a contorted mouth and twisted body. It happened once at John Lewis in the cafe and we were just stuck there until he came out of it.

At school once he began pacing and talking to himself and luckily found a clock to look at to re regulate ( he watched the ticking hand) that was caused by off curriculum changes. The pacing and talking to himself meant I got the call to come in. A full blown ASD meltdown is not bad behaviour ( he was well behaved) it’s someone having a breakdown. You can’t just act as if nothing is happening and move on.

Honestly it’s flipping scary watching someone bang their head and draw blood or talk about death whilst standing by the waters edge ( London was too busy for him).

Thank you so much.

Seriously what sort of ASD do people have experience of here?

My experience is my lovely ASD boy when younger literally beating my arm black and blue because I terrified him trying to get him when young into town to see a show. I realised never to try to walk him at night into town until he was a lot older.

I would take him to a shop and he would hide in amongst the clothes and lie down.

He got accidentally locked in a changing room at school so now trying clothes on he needs someone to stand just outside to protect him / make sure he can get out.

My experience is crazily spending money on birthday parties for him and inviting his entire class. He would just run away from the venue. I learnt not to waste money.

My experience is trying to make him queue for a plane check in and he told the check in desk that we had ‘ dangerous substances in our bag’ I was told told by the airline to never do that again and fast track at all times. ( it was a Beano sling - he was about 9). We have fast tracked since. We have decided with social services that we get one holiday a year without him and take him on one holiday. In my head I don’t want him to miss out but increasingly I realise it’s quite a hard effort. He kicks off for the first 50% of the time but decides when he gets home that it was ‘enjoyable!?’

As a child he thought that he had the wrong top on for school and ran completely to the end of the park towards traffic as we had broken a rule. The cars in the road were less of a threat than the wrong top.

The bushes on the pavement were more of a threat than the cars in the road - so he would avoid the bushes and walk on the road.

He would get enraged by street clutter eg bins and signs etc He would accidentally walk into them and get more upset.

As for non uniform day - what hell on earth was that! Literally we had to check recheck and check again and even then there would be distress and an outburst. He was petrified and shaking. I loathed non uniform day.

End of term or sports day at secondary, school even said ‘don’t come in’. I mean a school party equalled his idea of Hell. Anything like that and they took him to the library.

Change of teacher or a classroom - absolute panic stations and PA would withdraw him . It’s the wrong room on repeat.

Don’t even start on Christmas! Presents petrified him - what is in the box - think about why that might be! We would try to engage him until lunch
and then he bolted upstairs with a book. Presents meant surprised which meant change.

Menus - what do I order, so many choices. We gave him 3 choices from a menu. We had a scene when he went out with a PA expecting one place it was closed so we told them to go to another. Sure enough there was a bit of a melt down.

There was no way we could just carry on and act as if his ASD was not in existence.

To ask him to just ‘carry on’ would be like asking a NT person to swim in a tank full of sharks. When he is petrified, he is petrified.

We have similar in our family. Without Covid, DS would never have been assessed and his ADHD identified. DH would never have gone 'OMG that explains my entire life' and been assessed and his ADHD identified. I wouldn't have gone into autistic burnout (which I still slip back into at a touch of a button so not sure I'm actually out of it) at the same point that we have ND on our heads and actually understand how the assessment world works, and so would probably never have been assessed for autism (or not for years more), and I certainly wouldn't have been assessed for ADHD. My daughter's assessment was at her request because of my son's diagnosis, and also I had the confidence to believe I wasn't a complete idiot to have her assessed for autism because I had been diagnosed. Covid actually triggered everything. I may have eventually gotten there on the autism diagnosis but the ADHD for my son and husband would probably never have been diagnosed and meds are making a material difference to their lives.

On the 'buying a diagnosis' point - I have no doubt that there are medical professionals/clinics that exist that you can just pay and they'll give you any diagnosis you want. Of course there are. Thing is this isn't an autism/ND thing - this exists for any medical diagnosis. Pay enough money and you'll find someone willing to take the risk of being struck off and will give you a cancer diagnosis, or say you've broken your leg. You'll find bank workers willing to confirm a much higher salary and solicitors willing to fake an asset sale. There are always unethical people who can be bought. It is a tiny proportion of diagnosis and honestly the people who can afford to pay for this are rarely aligned with the people who would have any interest in purchasing fake autism diagnosis for their child. What is far more common is non-professionals not really understanding what leads to a diagnosis, not having the full background of a case and (for attachment disorder in particular) not appreciating that a lot (non-profound) autism is genetic and it is quite possible to have a child who is autistic and have been (objectively) a shit parent because your own challenges with autism mean that you have struggled to parent well. A child being autistic doesn't mean they've been parented well, and it doesn't mean that better parenting couldn't improve the situation.

I agree btw that there is some uncertainty over the diagnostic criteria for autism and considerable discretion left to professionals in how to determine whether those criteria are met. Again I disagree that this is an autism specific thing or this does actually mean that autism is being over diagnosed. A lot of medical diagnosis is an art not a science. And there will always be situations where one professional says no, and one says yes. Again, I would need a lot more evidence than I have seen to persuade me that the difference means over diagnosis not under diagnosis, particularly for girls/women.

I'll go back to my own example. I ended up with the most expensive clinic in my town. That was because they had a reputation of doing a very thorough review, and also a reputation for having the experience to identify autism in masking women and girls. I wouldn't be surprised if they have a higher rate of diagnosis than average for the town because they're better at diagnosing (an alternative psychiatrist I spoke to asked in my initial discussion with her whether I had started talking late, like this was anything to do with anything!).

I don't agree that's because you can flash the cash and get a diagnosis. This is because (a) I clearly instructed them for all assessments that I was not interested in a diagnosis unless they were confident in it aka I wasn't hoping for autism, in fact the opposite, (b) for DD I mentioned (probably obsessively) that I wasn't sure, and I didn't know what NT looked like, and that I thought she was probably an edge case but not autistic, and (c) for DS I said that given they'd diagnosed DD as autistic, I was 90% sure DS was (but also that he didn't want to be autistic and that I would love it is he wasn't). If the diagnosis was in anyway influenced by what I 'wanted' then it would have come back with DS autistic and DD NT. It was the opposite.

I just do not believe that autism is (a) materially overdiagnosed (although I accept that there may be a question on whether the diagnosis is now too broad - DD and I would both be Aspie in the old world), or (b) a diagnosis that can be obtained by a parent knowing what to say, or coaching their child on how to act. DD is acknowledged as one of the best actors her drama teachers have ever seen [stealth boast], even she couldn't hold up her mask effectively enough for the assessors. I don't believe another child would be able to hold up a mask pretending they were autistic for a whole assessment. If you react in an NT way to social cues, then you do that automatically.

It really frustrates me that people, including people with autistic children, keep harping on as if there's this whole raft of people who are misdiagnosed out there. It's a dangerous narrative but it's just not true - yes there are some who are complete fraudsters (there are also people who fake cancer), and yes there are mistakes and you make get some children diagnosed with autism who have another underlying issue. The narrative that this is particularly an issue for autism, and that parents are buying diagnosis is just bullshit.

I do think there is a whole raft of parents who have not yet/are not planning to go through assessment for their child who believe their child is autistic and are wrong because it's some other condition or bad parenting, or both. People really don't know what the condition actually is. I have a family member with an autistic boyfriend who is absolutely shocked DS isn't autistic because he's so like her boyfriend, and that's someone with a degree of familiarity with the condition. I thought DS was autistic, and I am autistic! I think this can be a problem because there's a group of these parents who don't qualify statements when they say their child is autistic (not 'he's on the assessment pathway', or 'we suspect' but 'he is') and this makes people think that diagnosis is far more common than it is. BUT this isn't people buying diagnoses, it's a result of long wait lists, the trend towards deciding that self-identification for anything is ok, and the fact that if you have a child with additional needs you have to fight so hard for them, there isn't room to allow anyone to question whether they do have those needs.

I'm not sure what I think of the self-diagnosed adult autistic influencers. On one hand, I've never personally met an adult who's been certain, pursued diagnosis and hasn't been diagnosed but on the other hand I tend to hang out with middle aged female autistic women managing boring office jobs and kids, rather than influencers, so I may be self-selecting. In my (adult) world no one gets any advantage from saying they're autistic when they're not - in fact the vast majority of people hide it. I am a bit wary about someone willing to take on such a role of explaining what autism is to the wider world, who hasn't actually had anyone independent confirm it.

I agree with you. But you make adaptations. I think the difficulties are when parents make no adaptations and just say that is how they are. For example you tackled the issue your DC had with tall black men. You gave him a chew in the cinema. You crossed the road.

I disagree, the lack of appropriate education doesn't make your daughter more disabled. It means she is being failed in her education. If your nephew lost his educational placement or that placement was essentially just babysitting rather than educating would you still view your daughter as more disabled? I don't think it's very complex, I think sometimes people justify their needs or their child's needs by viewing their disability as worse when it isn't or may not be. I don't know your daughter or nephew so I can't say but on the face of it, I would still view your nephew as more disabled.

What a horrible conversation. I really don't mean any insult and am just trying to put my point across. As I said earlier your opinion is just as valid as mine if different.