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.

The waiting lists are so high because everyone wants to be assessed! What did they think would happen?

Still a non-word imo - more a tautology. And largely American
https://www.oed.com/dictionary/uptick_n?tl=true

Which do you think is more severe? My dad died of melanoma - he had a broken back caused by a tumour. For sixth months he bled pools of blood from his nose and I was taught how to pack to stop shock. The tumour spread in his head and he had blood emerging from his gums that intermingled with his food and he cried tears of blood. It was horrific and I still have nightmares - my daughter now has anxiety and needed counselling as she helped with his care.

As a mum of an autistic teen I have no idea why people would assume parents are pushing for a diagnosis for a child to make some excuse for their poor behaviour. Do people genuinely believe that actually happens? It's among the same rubbish that all male asylum seekers are a threat to women.

Coming to terms with an autism diagnosis for your child is incredibly difficult and it is a complete minefield to get to grips with, what they need and how you can help them. Resources for children and adults with autism are completely inadequate and many professionals simply don't understand it and therefore offer inappropriate supports or just don't want to deal with young people on the spectrum. I am not sure what people think this diagnosis would actually do for their child that parents would ever think it was some kind of bonus to have it. My dd16 hates autism she is not at the stage yet where she is comfortable with her diagnosis and hates in her words being "weird". She has said to a psychologist she is ashamed of it. On what planet do people think anyone would want this for their child? Autistic people have a higher percentage of having mental difficulties, higher percentage of being unemployed, living in poverty and isolated. Now they have to deal with people rubbishing their diagnosis and complaining about all the "perks" they get from it!

They spent an enormous amount of time (and money) merging different presentations under a single ASD label. IMO it has been massively unhelpful to everyone but I doubt it will ever change. The impact on research and allocation of resources has been horrific. Self diagnosis has made somethings even worse.

@Noras my dad died of lung cancer. He had lived a full life, made all his own decisions, been married, had children, made mistakes, experienced highs, had mortgages, had a career, had capacity. He had a horrible death with little dignity which I won't detail but I'm sure you can imagine.

My son has severe autism. Dx at two years old bit initially put on the list for dx at 18 months. Will never live alone, will never have capacity, if he has a serial relationship there will be either neglect or abuse involved. I'm not going to go further with details as I think you can get the idea without.

Ds whole full life will be like this. Hopefully he'll never get cancer on top of this.

Which is worse cancer or severe autism is subjective, both are horrific. My dad would say the autism and I would agree. We give ds the best life we can but there is a huge amount he'll never experience.

There are children who are severe and don't have a 'spikey' profile. They are severe always, every day, forever. It is these people who should have a separate dx. Some of these are not dx with ld, they are severly disabled by their autism which ofcourse impacts on learning.

In regards to mental health. Why is it that those with severe mental health needs and autism describe that as severe autism? I feel it is still because of the stigma around mh. It is easier and more palettable to describe it as autism rather than mh (I recognise that autism contributes to mh). It is possible to have autism and no mh needs.

There is a big difference in presentation and needs of those with autism and severe mh needs and those with severe autism or autism and severe ld. Distinguishing between the two can only be helpful to all involved.

But who says all autistic children 100 years ago modified their behaviour? I’m not into general parenting, I didn’t use corporal punishment but I consistently used other techniques that other parents classed as being good used and they just didn’t work, school techniques that work on the majority of other children didn’t t work on my son either. In fact things like stickers and sticker charts made his behaviour worse which I didn’t understand at the time but looking back it was due to introducing another level of anxiety about the chart. He developed a sticker phobia in mainstream school and still to this day 10 years on he won’t have a sticker on him if we go somewhere where this is used as a means of identification. Going back to 100 years ago I guess thst the more corporal punishment was given out he may have complied in the short term but I honestly think it would have made him worse and eventually he would most probably have ended up in an asylum.

Very true

Agree apply for ehcp assessment asap. I was told back in 2016 that my son wouldn’t get one without a diagnosis so we waited. Things were very bad and obviously bad to anyone at this point he was throwing chairs , ripping things off walls, getting regular fixed term exclusions at age of 5. When we got the diagnosis school applied for ehcp assessment and we were turned down. One of the reasons was that it was a new diagnosis and the la wanted to allow time to see if things improved now he had a diagnosis. Not sure how this was magically supposed to happen with just a piece of paper and no other changes but there you go. Obviously we appealed and to cut a long story short he’s now in autism specialist school. However in hindsight I’d always apply for ehcp assessment asap if one is needed. You may be turned down but you may be turned down anyway if you wait, at least you get the ball rolling and can then go through the appeals process which can end up taking several years nowadays as there are three points in the ehcp process where appeals can be made.

@Purplebiscuitwithsprinkles There is a huge shortage of Educational Psychologists and a lot of them won't do a diagnosis until children get to Secondary but parents still push and push.

There is indeed a huge shortage of EPs, but they can’t diagnose autism or ADHD. So saying ‘a lot of them won’t do a diagnosis until X’ simply isn’t true.

No it isn’t true, it’s utter rubbish.

”In reality a diagnosis of ASD does nothing to improve the lives of people with it. “

That is just laughable. Diagnosis has massively improved my life and saved my daughter’s life. Her treatment that kept her in and out of hospital was adjusted to her autism after diagnosis. It was deemed hugely important by her team.

“If we look back at all the ADHD diagnosis of 20-30 years ago many were considered to 'grow out of it' and go on to live perfectly normal, healthy adult lives, leaving those who didn't 'grow out of it' a bit adrift socially, because it's a childhood illness (its not). “

Links and evidence please.

@Periwinkl3

It was more para 2 I was agreeing with, the school systems nowadays and lack of TAs in classes

People don't " believe" it happens they KNOW it happens from personal or employment experience! Why do some people refuse to accept this?

Generally the mental health needs of autistic people stem from the issues of having to mask and not having needs met / reasonable adjustments being refused.
It's not 2 separate unrelated issues they go hand in hand

I think people need to appreciate that autism includes the previous ‘Asperger’s’ I don’t think there would be as much push back if this was better understood. I know people know it but I think it’s not yet translated into real understanding. Research absolutely does support diagnosis being helpful in better understanding of self and identity which is hugely protective of mental health - which we know is massively compromised (disproportionately so) in the autistic population. No autism is not a superpower but neither is it a blight on society. It’s a fundamental neurodevelopmental difference and understanding communication differences should be part of understanding diversity. Yes some children seeking diagnosis will not have autism but that does not discount the validity of a properly conducted assessment just because it doesn’t fit with someone’s perception. As for ADHD there is again limited understanding of what that really means and of course it is not always a suitable diagnosis. A clinician should be very mindful of differential diagnoses and the impact of trauma/environment. That said trauma can co-exist with neurodevelopmental difference so it’s about a truly skilled workforce doing skilled assessments. The concern is the level of demand not being met with clinicians that are not adequately experienced. Can people buy an ADHD diagnosis. Yes and I think some of the assessments are not thoughtful or thorough enough (private online ADHD assessments may be valid but also may not fully appreciate contextual factors). Does that discount the huge gap in understanding of neurodevelopmental differences? If we had an insightful understanding society with an appreciation of social communication differences maybe ‘Asperger’s’ type autism presentations would need less diagnosis. Until then I’ll follow the evidence and hope things are done more thoroughly to better advance understanding and meet needs.

Overstimulation should definitely be part of managing better for all. The thing with many universal accommodations that support ND individuals is that they can benefit all individuals.

Get in the real world would you!!! No one is anti autism but there are MOST DEFINITELY paid for diagnosis of autism as well as other conditions such as ADHD, Anxiety etc!!

Im In 2 minds about all this as my son is in the position where we are actively discussing if supported housing might be the next step with social services and how independent he can become. I tell my son to go to bed and watch him into bed to stop him being up all night - he would be in the same clothes from the night before. He has been prompted to get up and will ask me what clothes to wear. Today is a non PA day because frankly I get stressed having to grapple with all these people coming into the house so I will take him for a swim and get him into a quiet spot in a lane etc. He will freak out about the bus there and back etc. He might try to make a cake and leave mess everywhere and put the mixer back in a cupboard covered in butter and flour. He will then walk around the house talking to himself about how unfair I am as I don’t encourage him to bake and in the process forget the cake in the oven etc. Yet he can get an A level!

Franky, I’m worried that all these people self diagnosing or declaring that they might have been ASD but are cured or whatever diminishes what I have to go through daily. It diminishes the plea for help from someone I know who can’t even recruit a PA for her son ( her son was a 2:1 at school so high needs).

I equate it to someone having low back discomfort compared to a broken back. I don’t dispute that degenerative changes might cause discomfort but it’s not as extreme as a broken back. Yes you might have struggled to work or had fewer friends - I hear all that.

In contrast, my son was bowel incontinent until aged 10 and was frequently left to sit in his poo all day when aged 8 or 9 as his PA professed not to have noticed. Even now aged 20 can only make 3 defined and learnt journeys on his own. He had to be helped into in a sack for the sack race by 2 fellow pupils when aged 11.

ASD is a currency and by self diagnosing there is a worry that people devalue a currency and for some they really have no life at all without all the support needed for their ASD.

For goodness sake I have a son with complex ND and myself have trich, have always been obtuse and misunderstand conversations, as left handed and could not write properly etc. I have even had a friend who is an Ed Psych say ‘you know you have the female presentation of ASD. ‘ I have every single component of dyspraxia and dreaded exams as I could not write fast enough and my pen bled ink all over. Great but I look at myself and think ‘I had a professional career - I have a marriage so what? ‘ What is the point of me getting motor coordination or ASD diagnosed.

Why would I clog up the system even asking for a diagnosis when there are kids like my son waiting? What so I can understand myself better? I can read up on SPD and ASD and self treat. I don’t need a label. in the meantime, kids like my son literally can’t function without support and ultimately the school will add additional support before funding is even received for it as frankly, in the example of my son, he was going nowhere near a DS classroom without a PA in attendance whilst at school.

So thats me frustration with it all. As someone who could easily self diagnose and even be diagnosed as ASD, I think ‘what’s the point?’ If I need to understand myself better I can read a book, Heavens I have had to fill in all the forms for my son and was mentally ticking the boxes for myself. I don’t really get the need to diagnose to have understanding of one’s self. I don’t need a diagnosis - and I sat that as someone who had an unsolicited diagnosis from a family friend who is an expert on ASD ( he had head of an ASD special school and a well respected Ed Psych).

Sadly we don’t have a country with unlimited resources and that’s my worry. There are kids waiting for assessments like my son.

It's a paid for assessment. Not a paid for diagnosis.
Semantics matter

If someone pays for any private meds cal assessment because the waiting lists are too long be that cancer, IBS or autism assessment they will be assessed. Generally by the same specialist you would see when you finally get seen in the NHS but definitely by the same assessment.
If you don't have cancer, IBS or autism the assessment will show this.
If you do you get a diagnosis

We don't pay out money we would rather use for something else if we don't have serious concerns.
I have never paid out for a private cancer assessment as I don't suspect I have cancer, I have never paid out for a private X ray to check for a broken leg because I haven't ever believed I have a broken leg
We unfortunately, had to pay out privately for my child to have an assessment which could have said not autistic. It however, assessed and the evidence was conclusive for diagnosis.

There go my child is autistic.

There are many comorbid dx that are common to autism; hypermobility, dispraxia, adhd to namea few. It doesn't mean that someone with all of these as well as autism has severe autism. I appreciate what you're saying in regards to the person masking but mh needs are still mh needs, not autism. A person without autism can have mh needs, a person with autism may or may not have mh needs. Mh is in addition not part of.

I understand and appreciate that we see this differently but why not say autism with severe mh? I do feel it is because of the way others react and to kind of hide the mh dx behind the autism (please forgive my wording, I've not really slept and can't think of a better way to put it).

Mh needs shouldn't be stigmatised but obviously they are in society still.

My other bug bare with this (I'm not saying this is the case here) is that usually with these conversations the advocate or person with autism/mh will insist those with severe autism must have severe ld and autism. As though there is a universal amount of impact of the autism and ld is added on but won't describe their or their person's autism and mh in the same way?

"Get in the real world would you!!! No one is anti autism but there are MOST DEFINITELY paid for diagnosis of autism as well as other conditions such as ADHD, Anxiety etc!!"

If you have evidence of GPs being paid by patients for a diagnosis of anxiety you need to report this.

Agree and particularly in girls, lots of girls with anorexia/ eating disorders are now being found to have undiagnosed autism, so in an ideal world you would identify these girls early and put support in place early which may be fairly minimal at an early stage to avoid things getting to the point where they are hospital in patients on and off for the rest of their lives. Also the prison population has a ridiculously high percentage of people with undiagnosed nd conditions. People only look at the costs now for a child in education and everything is looked at in isolation never the bigger picture, which i totally understand as everyone is given their budget and assessed on what they actually do not the future. Children grow up to be adults and are adults for a lot longer than they are children. if you can end up with an adult thst can function in society, work and pay tax it is far cheaper than having someone in prison or a psychcistric ward for most of their adult lives.

Agree; its depressing to see the thread continuing TBH.

On a need to know basis - then yes all the co-mobilities would be part of the person's profile.
But on a short interaction I would just say autistic.
Unless I'm caring for /working with someone I don't need to know their continence issues, mobility issues, learning disabilities or mental health issues. Or any specifics

Not GPs, medical professionals with Private practice!