to not understand MNers against neurodiversity

[UkiUki]

Inspired by another thread on here today but it’s an ongoing trend.

I’ve noticed that most, if not all of the time, when a poster suggests that a behaviour may be caused by ND, other posters jump on them and seem enraged that ‘everything is explained away with neurodiversity these days’.

There has been a lot of progress in understanding these conditions which has naturally contributed to an increase in people getting diagnosed. It is especially increasing in females as, per most medical issues, the parameters for diagnoses were created around male behaviour.

As someone currently in the latter part of the long and stressful diagnosis process, my motivation to suggest ND when I recognise certain traits in situations described is that my heart goes out to those who could flourish with a little extra understanding of how their brains work, especially children. I believe I would be a different person now if I’d had the support I needed growing up, instead of just believing I was lazy, clumsy and weird.

I feel a lot of irritation and sometimes outright anger from some posters, and the suggestion that people are using ND as an excuse somehow.

Aibu to not understand where this annoyance comes from?

Given this poster said she has ND children and has experienced ableism herself, this is a ridiculous comment.

Parents are often experts in their own child but they don’t get to speak on behalf of others.

The point I was trying to make was that parents can't do it on their own. They need professional advice on what to do and they need other professionals to follow through on that when they aren't there.

If professionals involved with a child don't detail tje child's needs, say what provision they need or worse say they can meet need when they can't, the parents are fighting losing battle. They can use every strategy under the sun at home but if that child isn't getting their needs met in school the outcome of that especially for nd kids will show in behaviour.

I don't know how much you know about ehcp's and send provision but without professional reports that detail provision eg a dedicated ta trained in xyz, d behavioural therapy, ot trained in sensory integration with ...... provision, classes no larger than 6 children, low arousal environment etc parents cannot legally enforce having their child's needs met. If professionals don't do this, parents can't do what they need to do to address behaviour fully in school.

That isn’t how diabetes is managed in school, there isn’t parent blaming and they are two entirely different scenarios. So we are now blaming and scolding parents of autistic children with difficult traits now.🤔

Schools do the managing of diabetes during the day, they’ll be the ones giving the insulin and food. Families are heavily supported by highly qualified diabetic nurses who also liaise with schools. Parents of children get next to no support and what treatments there are for serious MH struggles and behavioural problems are often based on NT treatments which don’t necessarily work that well with ND children. Often what little there is isn’t provided by high quality staff ( until it gets really serious).

Good luck all it's a tough landscape out there. I'd really like a world where parents and professionals work together and 90% of the time that's the case. It's just that 10% where things breakdown uses up a lot of energy and goodwill.

And I'm in favour of more complaints by the way but more of them need to land with MPs if we're going to get the changes that are needed. Staff on the ground are mostly trying to do steak dinners on a burger budget. So don't let the MPs hide in their offices dodging tough questions about adequate funding.

Complaints to MP's won't accomplish a great deal for families unless it's to highlight the LA acting unlawfully which happens regularly, but is addressed via other means. As the law at the moment is set up to support families and children to get their needs met. Many LA'S cite this as the issue in regards to funding. Where the system is failing is professionals not writing adequate reports so that provision can be secured.

Ultimately special educational provision (anything that trains inc SaLT, OT, special schools, TA's etc) is the responsibility of the LA not schools or NHS if it is worded correctly in the ehcp. It is not a secret that LA'S use wording that isn't enforceable to get out of providing the provision. It's also not a secret that LA'S don't have enough money but this isn't reason enough to not fulfil their statutory duty. Funding should be taken from non statutory services if required (not a good vote puller). Schools aren't responsible for provision in section F, if the LA doesn't give them enough funding for the child to have section F provision they should be documenting that. If a child without an ehcp can't have their needs met due to lack of skill set or funding, this should be documented.

Professionals trying to make steak dinner with burger funding are part of the problem. They need to be saying that they aren't meeting the child's needs fully not martyring themselves. It doesn't help anyone when they do this.

I am neurodiverse as is a lot of my family. I very much like that I understand myself and family more now. However I don't like neurodiversity used as an excuse for poor behaviour and I know people who work with neurodiverse children who agree. I also think it isn't fair on children to not prepare them a bit for society's expectations of them. It has been much harder parenting our neurodiverse child than our neurotypical one but worth the extra effort and she is thriving with firm boundries. I know people who excuse their neurodiverse kids hurting others and ruining events (not relaxed ones) and imposing absolutely no boundaries and these kids don't seem so neurodiverse they couldn't do better with firm boundaries, they just aren't given any. I know this is a vast generalisation and some kids need less expectations to do better but this is some kids not all with even mild neurodiversity.

Yeah we did all that, gave firm boundaries etc which encouraged masking, the wheels then fell off massively in the teenage years. “ poor behaviour” is subjective, what’s poor behaviour?

So many ND kids mask, they aren’t all poorly behaved needing firm boundaries however squashing down emotions and distress comes with difficulties. Big ones .

With this being an anonymous forum, I hope people reply freely to my next question and not angrily or with malice.

How do you feel about severe kids/ teens/adults who aren't violent but behave in unusual ways when out and about not in relaxed situations eg vocalising or making other noises, flapping, pacing, repeating scripts etc? Maybe in a restaurant, a shop etc

I’m ND so answering from that perspective.

I don’t cope with other people’s noise so vocalisations would bother me if it wasn’t somewhere I could wear my headphones. I’d be happy to move if that was possible. The other behaviours wouldn’t bother me if I could see it was due to a disability rather than drugs / alcohol.

The only place I can conceive that it would be an issue in practice in terms of vocalisation is something like the cinema / theatre or public transport if there isn’t an acceptable alternative seat. I don’t quite know what the position would be there, as both the other person and I have the right to access the service but our needs due to disability conflict. I’ve never actually needed to test this out, thankfully.

Thank you for being honest. I was wondering if people who are more obviously disabled by autism/ nd are viewed in the same way as those who are maybe verbal etc where behaviour are seen.

To answer your question about theatres, most have an involuntary noise policy. So if the person can't help making the noise they won't ask them to leave. I'll link one at the bottom of this post, they're all very similar, some aren't openly published.

We find that if we contact the theatre in advance where there isn't a relaxed show or a relaxed show that we can go to the theatre will offer us a box so we're away from others but they usually have to check with the company performing first. They won't ask anyone to leave or move because they make noise or movements associated with their disability because this would be direct discrimination. That said we do everything we can to mitigate and ensure we don't impact others. Many of the policies state that it isn't an acceptable reasons to offer a refund if someone makes a complaint.

There should be a link to Blackpool Grand's and a pic of Salford's Lowry.

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=www.blackpoolgrand.co.uk/app/uploads/2024/03/Involuntary-Noise-Policy.pdf&ved=2ahUKEwiOgdC1orGKAxX5QkEAHR2cHA4QFnoECCYQAQ&usg=AOvVaw3Ndv8BxKvzcSOIPcWrmuXA

I can't see that policy but it would be helpful to have a look at them.

We were at a theatre in the region (neither of those but also NW) when my DS had three fits during the show - two while sitting in his seat but we took him out as soon as we could - all were noisy. Our neighbours side/front/back were very understanding but I can't help feeling they wouldn't be as understanding if it were a stim type of noise rather than a fit, or blurting out due to ADHD-related impulsivity. We always book on the end of a row (primarily for toilet related reasons but it helps with fidgety child who needs to get up, and we have fewer neighbours that way).

I'll try to find a better one to link. I'm sure if you just search involuntary noise policy one should come up. They usually state that it's unlawful due to discrimination law to ask the person to leave.

https://www.blackpoolgrand.co.uk/policies/involuntary-noise-policy

https://derbytheatre.co.uk/our-policies/during-a-performance/

I found this on ATG (pic) we've booked directly with theatre's in ATG and have had really positive experiences with the help they've provided so ds can attend. I think it helps that we pre-empt and they know in advance as well rather than just turning up.

Pic

Because forgetting to turn the light off once isnt ADHD.
Its more than a fucking quirk... it affects EVERY aspect of your life.
It IS fucking exhausting.
And if its a late diagnosis its like suddenly everything makes sense for the first time ever.
Its not an excuse... its a reason. Yes.. you can make adjustments to a certain extent but even that doesn't work all the time.
Its how the brain is 'hard-wired' and trying harder just doesn't work. If it did- there'd be no lifetime of struggle would there?

@drspouse that does sound like an awful experience and I hope you and your ds was OK afterwards.

That's what I'm kind of getting at. If a verbal teen or adult who is holding it together suddenly has behaviours or vocalisation I would think people would be less accepting than if an obviously severly impacted person did but there are people who I think would probably want all disabled people segregated as well.

I think this may follow through in education some what that people are more understanding of those who are severly impacted than those who are "high functioning" (using the term because I need to try to get the point across not to insult etc).

I wonder how they would manage it if someone like me had a seat next to someone making involuntary noise? Because I’d have to leave due to my own disability (I obviously wouldn’t even try a relaxed performance!)

I think it’s great that they are inclusive towards people with disabilities making involuntary noise. But nobody ever seems to consider the issue of conflicting needs in any inclusivity policy.

Oh look another “autism whisperer” who seems unable to comprehend that their/their DC’s neurodivergence is not exactly the same as someone else’s.

My type of ND = a fabulous genetic quirk <preens>

Other people’s ND = likely the result of poor parenting, more effort required, no boundaries, etc.

Autistic presentation is variable. In some cases it presents as poor impulse control, disruptiveness, lashing out, etc - all indicators of needs not being met. All examples of “bad behaviour” too, but it is wrong to assume the autistic person is consciously not choosing the path of sanctimonious righteousness.

I think we need to update the “if you’ve met one autistic person…” phrase to “if you ARE one autistic person”. Being ND does not make you some kind of savant who speaks for everyone on the spectrum. Lots of these “badly behaved” kids are struggling, and need acceptance, adjustments and understanding as much as the “more deserving/less autistic” folk.

Alternatively, I’d give you an hour alone with my PDA DS, which you might find quite illuminating.

Well said

Honestly, I think they'd offer you other seats if available and that's it. Someone who makes involuntary noise has as much right to attend an event, use transport, goto the cinema etc as anyone else. It would be discrimination to ask the person making the noise to be quiet, to move seats or to leave. It says as much in the policy listed above.

But someone who can’t cope with that also has a right to attend the event, don’t they? So putting them in a position where they have to leave is also discrimination.

I’m not just talking about myself here; I’m competent enough to insist the venue provides me with an alternative and could cope with a seat move - a colleague of mine has a profoundly autistic DC who would be very distressed by others making involuntary noise.

As I said - nobody ever thinks about what happens when there are genuinely conflicting needs, and they should. (Could easily be addressed in this case by having. designated quiet zones)

The issue is around equal access. Everyone has the right or choice to attend or not. You wouldn't be able to say for example I can attend only if that person or person like them doesn't attend as you would be excluding someone in this case on the basis of their disability. You have the same right to attend as they do.

If you wanted to you could request a reasonable adjustment but I don't think requesting that other people don't attend would be reasonable. You could maybe ask for a private screening or performance but obviously that would come with a high additional cost which the theatre or cinema couldn't reasonably be expected to subsidise.

Also a designated quiet zone wouldn't necessarily stop someone who makes involuntary noise attending as again they can't help the noise as it's part of their disability so couldn't be excluded on those grounds. They could even argue that the quiet helps them to calm and possibly make less noise. Whether someone would attend knowing that they would or the person they're looking after would is another thing but in this country they would have every right.

Got it, so you only care about the rights of a very specific presentation and are happy for everyone else to be excluded,

I haven't said that at all. I've just pointed out that the law doesn't allow people to be discriminated against because of their disability. Everyone has the same right of access.

Are you saying that you don't want people who because of their disability make noise that they can't help disturbing you?