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.

@FrenchFancie what difference has a diagnosis made to your daughter?

I'm not that poster but diagnosis made a huge difference to us because it gave us strategies and (frankly) evidenced that we weren't making it up.

If your child masks at school and is violent and disregulated at home it is really really difficult.

It affects your sleep, your family life, damages your house and breaks up your relationship quite often.

If they can't mask at school it is also awful but at least everybody else can see what you see and the evidence can be generated more quickly.

DD saw a paediatrician once. Once she had an ASD and dyspraxia diagnosis she was discharged with 3 leaflets. The system works differently in different boroughs but the assessment should be multi disciplinary.

We paid to go private for the ASD dx despite it being completely obvious to anyone who had met DD she's autistic. She's never been in trouble at school, her behaviour is 'an example' according to her teacher.

The waiting list in our area is four years. We knew it was important we had the piece of paper to support transition to secondary school.

Great for you if you kid doesn't have SEN. It's not a moral failing. It's not easy to get anything- you need to become an expert in SEND law to navigate the EHCP system.

People on here are really horrible sometimes.

No they don't. They have a higher rate of DIAGNOSED difficulties because they have the funds to pay for private ASSESSMENT. You can't "pay for a diagnosis" and if you think that you should report the medical professional to their regulating body for malpractice.
Unless you are one and you can be sure this child doesn't meet the criteria for ADHD?
Obviously parents can indulge poor behaviour in children with ADHD as well as in NT children. Likely one of the parents has ADHD themselves and finds it a struggle to keep a routine.

I get comments more now never used to. I can’t work and some people think I’m lazy as I ‘look ok’ but I’m not

ADHD diagnosis must be a medical doctor but ASD is someone with the right assessment training and can be a doctor, a SALT or could in theory be an EP but this isn't that common I know.

Yes and it's frustrating. I've been diagnosed for 25 years and the difficulties my autism has caused me have had a profound impact on my life. It's like I'm trapped in a bubble where I can see others having a fulfilling social life but I've never quite been able to copy what they do closely enough to be accepted. I'm on a merry-go-round where I have hope, then I screw up and feel down, then try to convince myself that I don't need to fit in. Lather, rinse, repeat. The idea that I would choose this because I like having a label is grossly offensive.

It gave her understanding (after the initial upset) that she wasn’t broken, just different. That when she struggles to understand a social situation, it’s because her brain processes things in a different way, not because she is stupid (her words not mine).

it’s given her freedom to stim when she needs to - and us knowledge to buy a few small fidget toys that bring her comfort when she needs them. Before diagnosis she would be told off for fidgeting, so would stim in harmful ways (nail biting / nose picking) that we can now redirect rather than try to stop.

its given her extra time and resources to do the transition to high school - she has had an extra day in the new school, been provided with maps and teacher names & photos. Her autism and needs have been highlighted to her new teachers. I really hope this will make September an easier transition, as transitions and changes are very difficult for her.

its made both her and us aware that she finds some situations tough (like crowds, noise and high stimulation) and given us tools to minimise the discomfort to her when we do have to do them (so, for example, when we fly next we will book fast past for security because she can’t cope well with the usual security lanes).

yes I suppose we could have done all this without a diagnosis but, with a diagnosis it’s easier to understand that, for her, some things are just harder and we as parents can try to reduce issues where we can, and support her where we can’t.

it has helped us make changes that benefit her, that mean we can set her life up in a way to minimise stress and the times she has to mask. After the initial upset, it’s been nothing but a positive journey for us and I’m pleased we were able to do it.

I think MN ( posters and staff)is particularly anti autism and it’s quite shocking to see at times.

I'm a DM to three children my youngest being autistic he has a diagnosis. I would love more than anything for him to be like the other two dc. To be able to have friends, socialise with his peers. Instead I have a lost child who struggles in the world who cannot cope with the noise in a busy classroom, the lights etc. Who finds every day a challenge. He cannot cope in mainstream school. This is not something I wanted for him..I fear for his future. It's no some fad it's not something I wanted it's bloody hard and people look their nosies down at you for having a child with ASD.

One of the differences diagnosis makes is to the child themselves. They are aware their social communication skills are different. They know other kids interact with them differently. They know they have different interests.

Having the diagnosis means they understand it's because their brain works differently, not because they are 'weird' or 'not trying hard enough'. It enables them to start to self manage, e.g. with downtime, if they can.

In the same way DD understands that she finds handwriting hard because of her dyspraxia, she is coming to understand other things are because of autism. It's very powerful knowledge to have about yourself, especially given the rates of burnout in early secondary for autistic girls.

Right, as an actual ed psych who works as part of a multi agency diagnostic team, let's clear a few things up here.

1. Yes, there has been a huge increase in referrals for possible autism post COVID.

Reasons for this: partly because a lot of kids never really got back into school after COVID lockdowns, which exposed a tranche of kids who were "just" coping pre lockdown but who couldn't face returning. Many of these are undiagnosed neurodivergent children (but not all). Then we have a tranche of lockdown babies who did not really have social interaction opportunities at preschool ages. This is particularly oldest or only children during lockdown. These children arrived in school not knowing how to interact or share and got referred, but we would only expect a proportion of them to be autistic. A lot of them will have developed those skills in the meantime while on the waiting lists. There is also an uptick in children who have had too much screen time, not enough communicative attention from parents who are playing on their devices rather than interacting with their babies and toddlers. Some of these children have speech and language and social delays and again get referred for assessment. We need much clearer advice to new parents about how vital that first two years of parent/child interaction is. It would not be untrue to say that many people, because they have some familiarity with behaviours seen in autism, assume anything with those behaviours included must be autism. One of the additional problems of waiting lists going up is that referrals also go up as lots of people want their child on the list "in case". In my area I would say it is 50:50 whether it's a parent or the school pushing most for the assessment.

1. In our team we have a diagnosis rate of about 70 percent of referrals. Every child has an assessment run with integrity. Every child has a multi agency discussion and a number of assessments. We don't hand out diagnoses like toffee, and we do consider alternative reasons for the observed behaviours (such as learning difficulties, DLD, DCD, ADHD). We don't give a diagnosis lightly or because it's a fashion.

1. There is a range of outcomes in children diagnosed autistic. There have always been a small number of diagnosed autistic people - often but not always girls - who do incredibly well and become highly functional adults who don't really seem to struggle in the way they did as children. I have experience of this in my own family. There are plenty of papers about it. The controversy is not whether these people exist - they do - it's whether they were ever autistic on the one hand, or whether they are truly "cured/have outgrown" autism or whether they have become so brilliant at adapting and masking that they don't realise that is what they are doing. The jury is out. But yes, a tiny proportion of people with significant enough symptoms to diagnose as children, no longer finds they struggle in those ways in adulthood.

A diagnosis is just a diagnosis to a school. It does not change how much a school is given for a pupil or how a school supports a child the same way that it is for a child with dyspraxia. . I will admit dyspraxia was the focus 10 years ago for parents and now it is ASD/ADHD. We treat and support them as needed in the classroom as we would do for any child, hopefully so that they go out into the world and live their life to the full independently.
there are children coming into main stream with more profound need, due to
premature birth, genetic conditions who really do require special school places. These children do use up a lot of our staff resource and it is not the right environment for them to flourish.

In Wales, the pathway suggests that advanced specialist nurse practitioners could be used for diagnosis. They're not in our Trust however and over a 4 year wait to see one of the 2 psychologists (psychiatrists?)! (And currently no functioning adult pathway either!)

You may have been replying to me. I know what exponential means.
Do you?

Dictionary
Definitions from Oxford Languagess · Learn moree

adjective
adjective: exponential
1 1. 
(of an increase) becoming more and more rapid."the social security budget was rising at an exponential rate"

Yes it's been particularly bad the last week or two. I tend to hide them, or post once then hide them, don't have the mental ability to interact on these threads currently. Some of its kind of funny because its so inaccurate and stupid, and some is outright nasty ableism. Not that eithers particularly good. None of it bares any resemblance to reality.

I think there are more kids with quite extreme needs in mainstream and this impacts on their classmates, and can cause hostility in their parents. My Y4 shares a classroom with a violent kid who I assume has SEN - the class sometimes has to evacuate to be safe from them. A child was pushed to the floor and their head banged repeatedly on the floor this week. I don’t know what diagnoses this child has, but I can see that experiencing that behaviour & feeling it’s ‘excused’ by their ‘special needs’ could lead to hostility from parents.

I think the made up cases overshadow the genuine.

You can't make up an autism diagnosis! There is a very thorough assessment that in many cases has a years-long waiting list. My teen DD was diagnosed this year. The impact of autism on her ability to access education in particular has been devastating, leaving us with many fears for her future. However, most people meeting her probably wouldn't realise she has autism. It's not always visible unless you know the person well.

These ill-informed mindsets from people who actually have very little understanding of what autism is can be very damaging. I was hoping for my DD that views would become more enlightened, not less.

EHCPs arent based on diagnosis though, they are based on presenting need

@HucklefinBerry yes I do. A rate that has increased from a few % to around 5% over a longish period of time is not "exponential".

Dramatic language is not helpful. It is dehumanising.

These are people not an infectious disease.

"Those with paid diagnoses to flaunt the benefits system. "

Having a diagnosis of autism doesn't give extra benefits. You might want to read some accurate information on the benefits system.

I do agree with you particularly as ASD traits run throughout my family. I myself associate with it but have learned coping mechanisms to manage. That said I have a friend of a similar age who has recently got herself a private diagnosis of ADHD. I don't doubt its validity - she is all over the place, especially with money - but that's now her get out clause for everything. She's quite an entitled person anyway and has form for being very rude and cutting on our group chats. Now it's more common with the follow up message of ' I'm not rude, I just have ADHD'..it's getting quite tiring. She is rude.

If anything I think there is less stigma now to having an autism diagnosis, for a few reasons:-

More people grouped under the one diagnosis, where as previously it would be split.

More parents seeking the diagnosis to explain the difficulties that their child is having (whether autism or not).

An autism diagnosis being given instead of a mental health diagnosis. People with what would have been aspergers or hf dx describing themselves as having severe autism because of mh conditions rather than the direct service of their autism, more acceptable dx. Mh services are over stretched and struggle to support those with even the most severe mh needs so less pressure on services yo provide the right dx.

'Autism self advocates' describing autism as a super power rather than a disability/ making it a trend or seen as trendy/ fashionable.

Less structure in school/ life causing those who would have flown under the radar to display behaviours.

Tv shows (the good doctor etc) having characters with autism which do function very well.

I think we should go back to separating the diagnoses so that those with profound/ severe autism can have an understandable descriptor (so that Joe bloggs understands it's a severe disability and perceived as a quirk which will be grown out of). The problem we find is that ds is too autistic for some autism groups/ activities because he has the wrong 'type' of autism.

I think that there are that many people now with an autism dx that it isn't always seen as being a disability or is less of a disability because of the varying presentations of the people with a dx.

I agree you can buy a dx if you know what to say.

What are you referring to as made up cases though?

I work with children and families and there are parents who will tell you that their child has ASD or ADHD and they dont, never been diagnosed and you only know this later once medical records have been ordered

There is also a growing number of teenagers who self diagnose with a whole host of things, ASD and ADHD being a couple. They are insistent that they are on the spectrum but wont engage with referrals, assessment etc.

Thats what I would consider 'made up cases'.

Same. I don’t get benefits. I run a full time business and I’m not entitled to any help.