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.

Couldn't agree more. Same as the mental health issues bandwagon. It's delaying/preventing the the treatment of genuine mhp.

@notanothernana

I work with kids and a lot of behaviour, attributed to ASC or ADHD, is sometimes trauma.

What's your qualification in making that ascertain? Do you think that clinicians don't consider trauma and other dual and differential diagnoses as part of the assessment process? Some children can have experienced trauma and also have autism or adhd.

Thank you it is always nice to see things explained so clearly.

So presumably you are raising safeguarding concerns re FII and reporting the professionals diagnosing and prescribing these meds for children who don't need them then?

maybe you should collect some first hand accounts as to what the system does to families and children let down by the system. Your ignorance is frankly embarrassing. Having a friend does not make you an expert. you clearly have no first hand experience and don't know what you ars talking about.

I’m hoping that the DSM upgrades and there are more categories as I’m frankly fed up with the ‘as a child I think I had ASD but I mask it now scenario.’
Oh I wish that ASD diminishes as the child became adult for the parents who are really tired and struggling. I was so miserable yesterday as I contemplated my future life.

My Saturday was spent with a disability group and there’s no masking there. Some are really high intelligence but in the olden days would be described as ‘odd’. They all needed looking after and we had calls eg can you walk us from the bus stop to the group etc They are a lovely group but there is no masking there!

I think that how well you get on with ASD depends on

1 Executive functioning levels - these can be tested by psychologists

2 Working memory levels tested by SALT

3 SPD impact levels eg are you hypo or hyper - it seems worse for people with disordered muscle tone - that is a physical symptom that can’t be denied.

4 Language impairment levels be it expressive, receptive and pragmatic/ semantic. Intelligent ASsd people might overcome expressive language issues but receptive language is permanent and that in turn links to working memory. These are real and terrible disabilities and will impact the ability to function eg you can’t say 5 numbers backwards. You can do loads of memory exercises but it’s a real fight. You can train relentlessly on pragmatic language but something will occur that causes distress and confusion eg straighten yourself up - taken to mean - you will be tortured and your intestines stretched etc. If someone asks my son his birthday - I have a day of torture as he queries the purpose.

The ASD my son had comes with distinct things diagnosed eg motor, receptive language disorder, pragmatic language impairment and severe motor coordination impairment. Allied to all that are bowel issues that have diminished but not disappeared hence the usual blocked toilet problems. Add to that really low working memory and low executive functioning and that is my personal experience of ASD. Most of these things are tangible and it really is not an ‘invisible disability’.The mannerisms are off, the walk is different, the speech is just not normal flow rate or content.

However you can have high levels of intelligence and also have high needs ASD. My son has A Levels but is at life skills and not university - where he would not cope.

He has a complex support system of agency and direct PA all coordinated by me. He has no idea what he is doing on any day. His life is a continuous prompt and series of timetables. He has no interest in clothes, music, possessions, Christmas, girls etc He has no ability to initiate his own social life - we do it for him and arrange seeing people or activities. He will try to make a cake and let it burn or not properly mix it. He will eat cooked microwave salad. He will do an enormous poo from constipation but not be able to use a toilet brush. He can’t work out what to wear and won’t stick to a routine of asking Alexa about the weather to help. He can’t stand change and I have been in a 5 star hotel in tears. He can’t determine pain eg shoes too tight or asthma attack - that’s a head out of the window scenario. He can’t regulate sleep patterns so cooks pancakes at 4 am. He uses to bounce repeatedly but now not so much unless making pancakes at 4am etc He has to learn a route and practice it or can’t just walk out. He has so far 3 routes - one to the local shops and 2 between college campuses. For the latter he takes a bus but rings his dad and then me for the entire journey to let us know each stage of it.

However he can write a good History essay and knows more about History than many teachers! This is what a spiky profile is like.

My dd has recently been diagnosed with various things at uni. Dyslexia, auditory processing disorder, probable adhd, autism, dyspraxia.

She was a high achieving child and did exceptionally well at school and A levels. She's funny, social, always fit in at school, a model pupil. Never a minutes bother.

What I have noticed since she was diagnosed is that she uses her ND to excuse bad behaviour. She's had an awful time at uni, with little support and uni have absolutely failed her.

However, she has hidden behind her dx. What work she can easily do she hasn't got done 'cos dx'. She has an expectation that the whole world will accommodate her differences and that if something is difficult or challenging it is 'cos dx'. And if I try and say 'look life is a bit shit for everyone sometimes, sometimes you just have to crack on' I am told I don't understand her dx and should educate myself.

I think that kind of attitude, especially in young adults, is getting more common. Due to various reasons she is restarting her degree in September. I just hope she doesn't hide behind her dx and that she gets support, but also realises that everyone had to work hard, that having a dx of ND isn't a magic password to get out of difficult stuff.

I've just done a degree, as a very mature student. I've had various circumstances, including dds struggles, that has made my degree more difficult. But have always cracked on and done the work, handed every assessment in on time etc. Some of the younger students won't graduate til August because they haven't finished their dissertation, not finished essays etc. Have seen students refuse to engage in seminars or even attend cos ND, or constantly get extensions on work cos ND. It makes no odds to me but I can understand why some people are getting a little tired of people blaming ND for not working hard.

Life is hard. Harder for some than others. But a dx of ND seems to be used as a cop out by some. Which then means those with real, serious issues get lumped in with everyone hiding behind a dx.

@LadyFeatheringt0n

*There is no way around it, the criteria involve a degree of:

• self reporting of symptoms and behaviour
• parents (who are never objective) reporting
• judgement based assessment

As long as this is the case, there will be scope for an ever broader range of people to be diagnosed.*

Tell me you know nothing about the assessment process......

ASD assessment includes:
-pre screener

• reviewing any other professional reports (pads/ school/ social care/ therapists/ SALTetc)
• a full neuro history. This typically takes me 2 hours. There are very specific questions and we will ask for examples of behaviours.
• social communication questionnaire from school, often with a follow up call
• an ADOs with the child
• depending on age the child will complete their own AQS questionnaire
• if we need more info a clinician will do a school/ nursery observation
• a multidisciplinary discussion with mapping against the DSMV 5 or iCD 11

The full assessment takes anything from 10-15 hours including at least 2 but often 3 clinicians.

I'm not saying that there aren't unscrupulous people out there but it's up to parents and then health trusts to satisfy that nice guidelines have been followed where there are privately commissioned reports.

In the case of ADHD GP's/ health trusts are getting stricter (rightly so) in relation to shared care guidelines. So if someone thinks that getting an assessment then diagnosis from someone not following NICE is smart, they may be disappointed when they cannot get medication through the nhs, or follow up services.

We are on the same team. I'm not sure why you are arguing with me 😂
The rates of assessments and diagnosis HAVE increased hugely. And that's not a bad thing. It's because they were woefully undetected or ignored or misunderstood in the past.

Does this only happens in this country? I only know that there seem to be a big number of kids medicated for it. I saw a documentary where in the US the drugs enhance school and university performance. Knowing the great lengths people go I would have an open mind in that some may be not be legit. I even know someone where I am a bit suspicious as it fits the criteria. Also, benefit cheaters if they can self diagnose is an open goal. Of course the genuine cases would feel affected. It just need proper systems so it is not open to exploitation.

My DP also works with SEN children and has studied this particular aspect of childhood trauma, that trauma can in fact bring about what we think of as ‘autistic traits’, but from what I know (and I’m no expert here) they can also co-exist or be exacerbated by the other.

It's the amount of people self diagnosing and those who have been on the assessment pathway and told they don't have ASD yet still insist they do, that's to blame. Add in the ridiculous SM vids of self diagnosed people who are simply playing the stereotypes (there are some amazing genuine people with ASD making vids though and it's excellent for highlighting it. Abby Romeo being one, amazing young woman, total sweetheart).

Those are the people to be angry with, those are the ones I'm angry and appalled at!

There is no medication for asd. People may be on medication if they have something else adhd/ anxiety/ depression etc but people without asd can be medicated for those too and there are plenty of unmedicated people with an asd diagnosis

It does seem like ''Every man and his dog'' has autism now.

I think it’s really complicated and I admit I have no qualifications in this area myself other than having an asd child and speaking to lots of other asd parents over the years. There does seem to be a lot of adopted/looked after children with asd/adhd diagnosis. Is this because it is misdiagnosed early trauma or is it because the biological parents perhaps have undiagnosed Sen (these things tend to run in families)?

A lot of the problem is people on Tik-tok and Youtube quite frankly making a mockery out of the issue, often downplaying the real struggles and celebrating it as some kind of quirk. So many of them claim to be struggling with a social and communication disability while also apparently functioning better than most of the population (relationships, career, organised house, managing money, hobbies, travel etc). The kids with their spinners and headphones suddenly have no issues with a trip to the airport for water parks and Disney! The above obviously raises questions about the validity of the 'diagnosis' in these cases and I believe adds to the lack of tolerance in every day life. People with ASD aren't taken seriously anymore.

Why are you angry and appalled? I’m undiagnosed but know I have autism. Are you angry and appalled at me? I went through childhood, teenage years and early adulthood not knowing, where I could have benefitted from knowing, maybe even had access to some support. I’ve never gone around shouting this from the rooftops because there is a certain amount of shame attached to it.

I haven’t read the full thread as has descended into proving your point exactly!
so much misunderstanding.

@Lostmymarblesalongtimeago Exactly how am I being ignorant? And I do have first hand experience of SEND...myself...severe dyslexia diagnosed at University a long time ago... it is not relevant to now as things have moved on a lot since then.

I also have my nephew that is currently going through an ASD assessment his experience is widely different to a friends in the north. Step 1 GP Step 2 referral to to an assessment centre reports are taken from various sources Step 3 further assessment via an EP and then meeting with schools to put things in place.

Friends school = School to EP then back to school the GP service is overwhelmed so that step was removed.

Just because I have first hand experiences doesn't make me an 'expert' everyone's experiences are different!

There is far too much pressure on schools when they are the ones leading on diagnosis, in a neighbouring local authority to me only Ed Psychs and Paediatricians lead and schools write reports to submit for them to make more informed decisions before measures are put in place this system works appears to work much better than where my friend is.

As I said before I really do hope the government invest in SEND and the EP training more.

Just going off of DP’s experience here, it does seem to be prevalent in looked after children. If there was serious trauma during the early years, there is a much higher chance of attachment disorder, which makes a lot of sense to me. Maybe this could lead to ADHD or ASD ‘like’ behaviours, or otherwise the parents were always more likely to be unable to parent due to their own ND. A mixture of a lots of factors. (Sorry edited)

How do you know you have if you haven't been diagnosed? Why is ND seemingly the only thing that people don't think you need a diagnosis for?

I wonder if there is an unfortunate convergence of things happening at the same time?

Children of all school ages are probably still struggling with the after effects of lockdown on their social behaviour, academic progress and arrested development still being felt. Something children, parents and teachers are still trying to cope with.

An increased awareness, yet ignorance of ASD and the fact that it is a spectrum with no clear cut symptoms or boundaries. For those who have struggled and got a diagnosis there is no ‘one size fits all’ solution which makes it harder the public at large to get their head around. Diagnostic services are overwhelmed and parents and children are being left to struggle for far too long without support.

There is also some spectacularly bad parenting, possibly aggravated by lockdown, with a new generation increasingly bought up with electronics, fast food and with parents who seem to feel more entitled and with less coping strategies than ever before.

This seems to have created a perfect storm where children with ASD are being tarred with the same brush as bad behaviour and parents looked at with suspicion and judgement. I’m sure there are also a minority of parents who want a diagnosis to excuse their child’s behaviour or poor academic conduct, which again backlashes on those on genuine need.

It must be awful to have a child feeling desperate or angry or bewildered and having adults around them rolling their eyes and using words like bandwagon and fad.

We didn’t find it hard to get a diagnosis. We went though NHS right to choose and the whole process took around 6 months, including waiting times and time between appointments.

Getting a diagnosis (ADD and Autism) hasn’t helped my DD one bit though. She gets some support at school now but she isn’t eligible for medication and all it’s done is give her a label she already knew 🤷‍♀️

I think there’s too much emphasis placed on getting a diagnosis, with people thinking it’s a panacea. “I felt so relieved when I finally knew what was wrong with me” etc. It hasn’t been like that for us.

The reality is that there is a range of opinion clinically on whether there is now over diagnosis of ADHD. A range of factors are involved, including the change in diagnostic guidance (from impairment to symptoms); the depth of diagnostic procedures; the impact of Covid on childhood socialisation and confidence; the change in public attitudes towards diagnosis and acceptance of neuro-divergence.

There are some legitimate concerns about the impacts of this phenomenon including understanding the effects of lack of human interaction and use of social media; the medicalisation of difference and over dependence on prescription drugs and life course implications of that and the loss of resilience and motivation. And of course, the impacts in terms of shortages in medicine supply.

Outside of the growth in ADHD diagnosis there are legitimate concerns about the over medicalisation of society which may impact independence, resilience and agency in the population. Ideally we'd be exploring all options for inclusion and support rather than medicalising non life threatening conditions and labelling people with all the implications of that to identity and esteem.

Attachment disorder seems very prevalent in children who have lost a mother early - or been in care.

Bowlby wrote of it decades ago, with his 'Attachment theory' I do think he is right {Unfortunately}

Even when placed with a loving family , early trauma and loss leaves its mark.