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.

What were the ones you think refer to you?

I’d say the only one that definitely doesn’t apply to me is taking things very literally. Although sometimes I don’t get the “humour” when reading things online etc.

Actually I don’t think I come across as blunt or rude either (at least I don’t think I do!). So five out of seven.

My son

microcephaly on 9 percentile as a baby plus a flat back of head
hypotonia - repeated look at his ‘creases’ on his hand by medical staff!
He had cellulitis before aged 2
Prolonged fits lasting up to an hour ( Valium up bum)
VEP -( visual evoked potential test) showed latency and grey matter damage
Weak swallow - tube fed and then Carobel
Poor motor development - wanted to test for MD
Language delay
motors coordination disorder
language disorder diagnosed
SPD diagnosed
bowel disorder managed on movicol
perforated ear drums both sides and holes in ear drum
failed gromits - resistant bacterium so had a variety of penicillin given
permanent minor hearing loss
Now early hair loss at aged 20!

I hope that Bumpity Bump finds that enough physical evidence of ND!

I can try and explain how I experience the symptoms.

So not understanding how others are thinking or feeling - it's not like it's hard but I can figure it out, it's just complete confusion or just not realising that you have got it wrong.

Getting very anxious about social situations - only going into a social situation if there is no other choice

Finding it hard to make friends - but not understanding why

Seeming blunt/rude - but to you it doesn't seem like that at all. Not being aware of your tone/volume however much you try.

Finding it hard to say how you feel - because you don't know how you feel

Taking things literally - in your 40s you are still learning what some phrases mean!

Having the same routines every day - without them you could not function at all.

Hope that may help a bit!

My son had a VEP test done by a neurologist and we were told that he would likely have global delays so yes if they bothered to do tests they might well see ‘damage’ it’s just that they ran them as my son could not swallow for 2 years.

There was ‘latency’.

Conclusions: Hypotonia is a recognizable marker of ASD and may serve as a “red flag” to prompt earlier recognition and neurodevelopmental evaluation toward an autism diagnosis.

And as someone who lived this I can tell you why it links to ASD - because the feed back to the brain from the body is all wrong and this links to ASD.

If you can’t touch your nose at aged 11 because you don’t know where it is - you will have a very unsettled and distributed sense of place and want routines/ rigidity etc. when that is combined with any hearing loss then language is impacted. glue ear is a key issue because there is a weak swallow. So the kid has poor feedback from muscles and can’t hear! ASD is highly likely.

We actually saw a paediatrician who had a special interest in the links between fainting and ASD (I think he had written a dissertation on it). He said could be a couple of things: response to autistic overwhelm or linked to hypermobility & low blood pressure- basically poor function of the autonomic nervous system.

On the other hand both her dad and an aunt are terrible fainters so could be random. Her NT little sister used to faint when she was little as well with breath holding. She has such poor interception she can't ever tell us what precipitated it so hard to tell

Such an interesting post. I have 28 YO who was diagnosed with ASD aged 6. The diagnostic process took over 2 years then and was a relentless multi disciplinary affair. Paediatrics, child psychology, speech and language and child occupational therapy.

as well as the known social difficulties my child had and still has obvious physical impairments. Missing all the developmental milestones, very poor motor skills, sensory issues, poor proprioception (perception of your body in relation to physical objects) balance and co-ordination issues as well as a severely restricted diet.

Im sort of glad that the diagnostic process and recognition of the condition has improved and moved on but yes, inevitably it was always going to result in possibly people being misdiagnosed, not investigated for alternative diagnosis or just being given that diagnosis because it’s easier. It’s a see saw. Was it better when we had to wait 2 years for a diagnosis? Or is it better that kids get diagnosed more easily and quickly these days? I don’t know?

I will say my child has just successfully completed a masters degree. Great. That was with securing the appropriate support. Can he feed himself, keep himself and his surroundings clean and liveable, manage money and admin affairs and basically live an independent life? No, not in any way at all. It’s a very complex condition mentally, socially and physically.

my one pet hate is parents who self diagnose their children with ASD. That is a slippery slope for me.

there was no way to financially gain benefit wise out of having a child with ASD when my child was diagnosed. The part of me that sees the good in everyone hopes that could never be a reason for the increase in diagnoses

What is NT?

Conclusions.: The latency of the VEP accurately reflected the amount of demyelination in the visual pathway, whereas the amplitude correlated with axonal damage. This study supports the concept that the VEP provides a highly sensitive tool with which to measure demyelination in optic neuritis.

So my son had this. On a terrible day I got told this my an NHS neurologist and told there might well be global delays.

Is demylination of nerves enough of a physical sign?

Maybe the NHS could follow up on how many ASD adults have had of have hypotonia/ demylination and more work on the gait/ motor issues so that people with ASD did not have to have people dismissing their disability?

Yep. My autistic child wasn’t diagnosed by a paediatrician. In our area they would be if referred under the age of 5. But after that they are referred on to the cahms or equivalent service the area to wait to be assessed by a multidisciplinary team. Even before that there was a graduated approach to involve the school nurse for a while to try some strategies around personal care which was a big issue. We did get seen by an Educational psychologist but they don’t diagnose autism or adhd. She was brought in for a while to try out strategies for managing a particular behavioural issue but she was clueless as EPs don’t tend to specialise in the area we needed. She referred on to cahms. Through our cahms service Our assessments are done by a caseworker - ours was a psychiatric nurse but not all are - and then we had to talk through the history from pregnancy to present day. Child was referred to occupational therapy to be assessed in a couple of groups situations regarding their social communication behaviour. Someone from the team also went to school to do an observation - a caseworker - and eventually our nurse also did several home visits. All the evidence collected went to a panel to then be discussed called a formulation meeting. The outcome was either yes or no to diagnosis. We got a no first time but ended up re referred back into the system another year later, went through the whole process again and got a diagnosis. Girls in particular are hard to diagnose due to masking. Whilst in our area we got seen fairly quickly when referred, it took 6 years with a no and a discharge and re referral to get the diagnosis.

so for anyone thinking people can get them easily when their kids don’t needs them they’re wrong.

Yes we need more EPs, however they tend not to be involved in the diagnosis of ASD/adhd and are used more for other assessments around of learning ability and when families or school apply for an EHCP assessment. I did ask at one point to see a clinical psychologist who took over our case for a while first time around as it was quite complex and he agreed we needed a diagnosis but the panel said no at that time. The second time round the nurse was trying to get a psychiatrist involved but didn’t manage to. They are needed more for adhd and when medication is prescribed.

I work in schools and see the impact of the increase in diagnoses. But these kids were always in school. But in the old days schools were very boring, rigid, followed strict routines, highly disciplined, learned by rote etc and many autistic people coped on these environments, especially academic autistics. Those with behavioural issues or several learning disabilities were often shut away from mainstream schools and rarely taken out in society. Some would have been institutionalised and heavily medicated. Schools have changed over the years, for the better and the worse. Society has changed a lot. Consequences have changed. Lots of ND would have left school at 14/16 but not they’ve got to stay in education or training til 18. Technical schools and colleges vanished. Lots of ND young people can no longer cope with school environments anymore and unless they have a severe enough learning disability to get them an EHCP to get into a specialist school or to get support in mainstream they’re just expected to get on. My own child has no learning disability omitted, doesn’t have an EHCP and attends mainstream. She’s bright and in some too and middle sets. She struggles massively some days with the noise, the amount of people and lots of other things but she’s also good at masking and looking likes she’s coping and just getting on.

I could go on. Everything’s a fight and resources are stretched. And yes, there’s lots of the rolling from people who don’t experience this and lots of unhelpful comments from people trying to cure autism or suggest they’ll grow out of it. Well guess what, autistic kids grow into autistic adults. And the more awareness and publicity ND conditions get the more people will realise they or someone else they know are actually living with a form of ND.

Interesting Nora’s. My child has the funny gait. It is down to lack of sensory feedback. We all get sensory feedback every time our feet hit the floor, we aren’t aware of it because it’s normal. It’s impaired in some people with ASD. In our case my child as a youngster used to jump on beds (until they broke!) in order to get that sensory feedback. The solution was a trampoline. We still have a trampoline in the garden now and yes our grown adult still uses it.

we were very lucky to take part in some clinical research when my child was 8. It gave us access to tests not routinely available on the NHS and that’s where the sensory issues were identified. It’s an absolutely fascinating subject and not well understood x

But in the old days schools were very boring, rigid, followed strict routines, highly disciplined, learned by rote etc and many autistic people coped on these environments

Thats the opposite of what I read on here. Posters normally say schools are very authoritarian and rigid now, whereas they were more relaxed in the past.

In the past no uniforms now uniforms irritation to skins uncomfortable..schools very strict.on uniform and minor variations can cause detention etc. this causes anxiety it tie correct, is skirt right length
Then odd non uniform days where the rules don't apply. Change can be difficult to navigate. What of I make a mistake and don't wear uniform what may happen etc.

In the past schools were routine and rules were standard. Classes had.mixed ages. Schools were generally smaller. Now the small schools have been closed. Schools may have routine but routine goes out of window randomly for themed days. Rules are different in different classes.

In the past classrooms were quieter. You didn't speak unless spoken to. You sat in your seat and worked at a desk
Now sometimes you can speak and discuss things with peers sometimes you can't. Sometimes you can move around sometimes you can't. Sometimes you work at desk, sometimes it's art etc

It's all very unpredictable

Things were more rigid in schools in the past. Strict rules, scratchy uniforms, corporal punishment. Then things got looser with no or casual uniform, group work, no corporal punishment or rarely, less strict rules. Now it has got stricter again. I was educated under the first two systems. There are pros and cons to both ways.
Strict uniforms were brought back because most parents wanted them. Most teachers did not. The group work in the looser education system was harder for children with ASD. And there have always been big schools. What has changed is the closure of small village schools as a cost saving measure.

I think society in general is going backward! I see so much sexism and racism and hate speech on Facebook etc .. it’s terrifying the way humanity is going in general

This is a case where probably both things are true.

There was a lot more flexibility of kids learning, how fast they progressed, there was less testing, less focus on high academic performance, more options in terms of topics covered. Teachers had a lot more autonomy.

Now there is a lot of stress, focus on academic achievement, etc.

But at the same time, classrooms used to be more orderly, quiet, clearer expectations and rules, everyone doing things together.

Yes, an ed psych on a multidisciplinary diagnostic team. Not a standard school based EP who apparently also has a policy not to diagnose before secondary....

I was at school in the 80s. No one cared what GCSEs I got
Sixth Form In those days was small . Only about 4/5 went to uni.

No teacher pressured me or told Me the world would End if I didn't pass

We also had other routes out
Jobs were available that didn't need a degree post 16 . We had a lot more choices it felt.

Also a few decades earlier kids could leave and get a job at 14/15.

Working is better as you have choices. You earn for your efforts you can leave of your own free will.

I believe burn out can be avoided with choices that are the child's choice

Now we push to hard for too long with
Little hope of a good job.

This is true
For all teens let alone those with ND.

I totally agree. As a sufferer of fibro I have had ‘friends’ offer advice, if you can call it that, to just get on with it, it’s not that bad. This condition has been life changing for me. Because I look ok, I am ok. I’m in pain 24/7, but pain is invisible. I’ve got to the point where I hate telling anybody I’ve got fibromyalgia.

This

Totally agree with this. My youngest child is showing signs of autism and adhd. He lost his dad when he was 5 in traumatic circumstances (suicide). I strongly believe the chaos leading up to his death and my poor mh since has altered his brain.
I've attended a few ND support groups recently and my take home was that there are cases (not all) where home life, trauma etc is the cause. I also believe the world we live in today is causing issues. Screen time is definitely a big factor!! So many have no attention span these days. I found the point the Ed psych made earlier very interesting!

I am so sorry to hear this, how devastating for you and for him.

However, if behaviour is being caused by trauma or screens then it is not autism. These are conditions that are present from birth and this is a key part of the diagnostic assessment criteria. They are not caused by environmental factors or life experiences.

I sympathise, my husband has been disabled by a "bad back" for over 30 years. He had an undiagnosed deformity of the spine, he just thought everyone had a sore back most of the time as that was all he had ever known. Fast forward to him in his 40s and he was in a car crash, Back pain got worse. Shortly after this he was injured at work, couldn't move as he was paralysed from the neck down. Fortunately that did improve but we were told he would be in a wheelchair within ten years and would possibly be quadraplegic. He has been lucky in that 32 years on he is still walking, very slowly, very short distances but we count our blessings. He is in constant pain, morphine takes the edge off but he is never pain free.

Of course bad backs are a joke, malingerers the lot of them. I do think some of the attitude to bad backs did transfer to fibro so I know what you are going through. One advantage he does have is he has MRI scans that prove the problem, I don't think you have anything like that for fibro.

Agree with this. There are links between PTSD and ADHD, but not autism that I'm aware of. Even with ADHD I think the jury's still out on whether it's PTSD leading to ADHD, or that ADHD increases the risk of trauma causing PTSD.