to not understand MNers against neurodiversity

Sometimes they behave unpleasantly and unreasonably. Staff/professionals do have their limits. I posted upthread about the horrific ableism I've encountered from some families (and not always parents, as I worked systemically and sometimes that included grandparents and other close family or kinship carers) as an openly autistic psychologist and family therapist when I worked in CAMHS. Either I wasn't autistic enough for them, or I was too autistic to be competent to help. Either way, like fuck should I or other ND colleagues have ever had to deal with that crap.

Most of the time, unpleasant and unreasonable behaviour when it happens is caused by burnout, exhaustion, carers being unidentified ND themselves and no support for that, having been let down many times by services, etc. But there are just some people who are never happy with anything you do, unless you wave a magic wand and get rid of their problems without them having to lift a finger. Everything is everybody else's fault, they are the victim of their child, their situation, the school, professionals, the system...

Sometimes, there's a common denominator among all of those problems that they really do refuse to acknowledge.

People bring a prick has nothing to do with having a ND child, it’s a pointless discussion.

"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 was struck by this. It made me feel compassion for myself, for my
Son, for all of us "quirky" folks.
"Only" ADHD, here, but we have had some interesting times.

I work with people whom are vulnerable. Some people are stressed and under so much pressure and they take it out on me. I can empathise. I expect it. However, sometimes horrible, demanding, offensive, sexist, racist etc people need to access the service I work for. I would always treat them with respect and never let them know I am offended by their approach. The truth is, unpleasant and unreasonable have children with additional needs too.

Edit to add: Of course horrible, demanding, offensive, sexist, racist etc people work for services too. One would hope their employer can address this and they obviously shouldn’t be in that sort of role.

I regret to inform you that parenting a ND child doesn't come with a free halo. Sadly it is completely possible to have a ND child and also be a complete asshole. In some cases it's just an exhausted, struggling parent and people tend to recognise that and offer as much support as they can in a broken, underfunded system.

And even when they're a toxic prick they STILL get as much support as possible, they just raise people's blood pressure more, which means that ultimately people go off sick or leave, which strangely enough puts EVEN MORE strain on the system.

Alleged staff calling struggling children and their families “ unpleasant” and “unreasonable” speaks volumes and is deeply concerning.

Actually my experience is that knowledge is improving but resources and staffing are dwindling. Too much is being subcontracted out to the charity sector which varies enormously in quality. It's really quite shit. Sadly I'm also seeing more defensiveness from some, usually those who have had to deal with the deeply unpleasant and unreasonable minority. Every ND child and adult pays for this by association and it pisses me off.

I agree but the solution isn't to fail children and families by not giving them what they need to get the child's needs met. By doing this the child is being directly failed by that professional.

Yes there needs to be more funding but that will never happen while the professionals employed by local government and health services don't acknowledge that formally.

You can go on any send Facebook page and you will see repeated posts by families who have been told that x school can meet need but their child is on a reduced timetable, ta's are providing ot/slt etc when they aren't fully qualified because a "programme" has been given etc.

I would love to see a world where school and health professionals are held accountable for reports which fail to specify and quantify needs and provision. I'd love to see LA'S held to account for the vast amounts of money they waste on legal costs to fight tribunals where over 90% are won by families.

Blaming families and worse the children if you are a professional in the system knowing that they are being set up to fail by not having what they need is absolutely awful. Some families fight for what their child is legally entitled to, that isn't asking the Earth, that's asking for a legal right. They shouldn't be vilified for that and definitely not by professionals who are letting them down.

Well if you were as knowledgeable as you say you are you’d know that is correct,how bad it is alongside the training initiatives and services out there that support ND people to access services they are completely letdown in and to protect them from ending up without services or in inpatient as a result. The amount of professionals we come across saying this illustrates how dire things are for ND children and adults.

The irony of your last paragraph after lecturing ME about making sweeping statements 🙄

I don't think anyone actually disagrees with this but all our services in this country are chronically underfunded and working beyond capacity. We all need to be joining forces to demand more resources and properly funded education and mental health services but people don't want to pay more taxes and we get what we pay for.

I literally can't think of any public sector organisation that has adequate resources to meet need.

Ok so don’t don’t make sweeping statements about “professionals”.You don’t speak for all and I doubt you have a professional role at all because you certainly don’t sound very professional.

You refusing to say what your role is speaks volumes, it’s perfectly possible to say what your role is but you won’t because you don’t have one.

“not all parents are like you.“ and not all professionals have adequate knowledge of ND. The vast majority don’t have any at all and what they do have is stereotypical and incorrect.

Perhaps you ARE an expert on your child but (whispers) not all parents are like you.

I'm not really sure why you don't seem to understand that. I'm a ND parent of ND DC but I still have the humility to reach out to other professionals for information and advice as required.

And I'm not telling you my professional role because a) it's quite outing, b) I'm faintly amused that you feel so entitled to know my personal information on an anonymous Internet forum and c) I could claim to be the Queen of Sheba as could you and anyone else posting here 😉

Exactly this!!!

I know many people who work in education that I am grateful for. I've known some that I wouldn't house a goldfish with. Not all are saints.

With the best will in the world while some professionals, usually those employed by the LA and NHS say they are doing everything to help, they hardly ever follow through when putting needs and provision in writing in a specified and quantified way. Ask any parent who has had to go to tribunal for section F of an ehcp. They don't do this because they don't want to jeopardise their career/ job or in some cases believe LA policy trumps the law.

Children who act out/ become violent/ go into crisis etc are not having all their needs met, whatever these needs are. Ultimately in school we are still talking about children. If a nd child is lashing out, why Is that? I'm sure in some circumstances it will be the child is a pita but in many circumstances it will be because they have needs which aren't being correctly dealt with. The professionals interacting with that child including those in school should be putting into writing what they are doing and what support they need or what assessments they need to help them.

Thankfully autism is a protected disability and ND children and adults are entitled to have their needs met in order to have an education and to access services. Great you don’t need reasonable adjustments, others do.

What is your role?

Many many services are filled with staff truly ignorant about ND from the bottom to the top hence the huge amount of training being rolled out to the NHS etc. If I’d listened to the services treating my dd she’d be dead, the ignorance as regards ND was truly shocking. I was the expert as regards my child and I was proved to be right.

This 100% and the more unreasonable the demands by a minority the greater the pushback on everyone else. Sometimes I flinch when I hear these aggressive demands because I see the reaction it gets. People pull up the drawbridge and think GFY and then the next ND person needing an adjustment has to work harder to be heard. They now have to get past initial hostility where before there was curiosity and goodwill. I have come to genuinely dislike the 'ND movement' as it has some of the worst offenders.

Exactly. If the help and accommodation that a child needs in the classroom, for instance, is going to have a detrimental effect on the learning or wellbeing of others, which takes precedence?

It is pointed out a lot that all ND people are very different. My autism and my needs are different to that of another autistic person. And these needs can vary massively.
In reality it is impossible to meet the needs of every single ND person. Schools are a fine example of this. They have limited money and resources and what is helpful for Tim might be totally useless for Oliver.
We will never meet the needs of everybody. It’s not feasible in any way. The staunch ‘the world needs to change to adapt to ND people’ are missing a rather key element to this that those needs vary to such an extent that it is impossible for this to happen. The more logical step is to allow adaptations that can be useful to everyone in society, but work with ND people to help them to try to adapt and function as best they can in the world they live in.

I don't 'bang on' about anything I participate in discussion. And as a ND parent of ND DC working with ND and NT children and adults I'll feel free to discuss anything I like, thanks.

And my point is: sometimes parents AREN'T the experts on what their ND child needs, which is why we have things like social services, mental health services, an education system and a health service. The idea that EVERY parent knows best what their own child needs is misguided at best and dangerous at worst. Some parents are so shattered and unsupported caring for their children that they no longer have the resources and energy to teach them the skills they need to function in the world. Throw in things like poverty, abusive ex partners, poor education, trauma and substance misuse and some parents NEED more support in place to help them be effective parents.

And if they are the minority why are you continuing to bang on about it?

Pushing to one side the fact that parents are the experts as regards their children and their ND. You know maybe you might want to listen to what they have to say sometime.

And your role is again?

Me: The trouble is it prevents open, meaningful discussion about improvements which actually harms the ND children and adults most affected!

You: Oh do give over. I couldn’t give a stuff if you find it wearing.

Thanks for illustrating my point perfectly 👌 👍 Good job.

Maybe assume that most professionals are doing their best for ND children (and indeed adults) with pathetic budgets, low resources, huge waiting lists, stressed staff teams and a SUBSET of service users who demand the moon on a stick and push back every time they are asked to parent their children in a way that will teach them to function successfully in the world. Thank God they are a minority but they swallow up enormous time and energy with ridiculous demands and endless carping. That's where we see the narcissism.

I would much rather spend my time with everyone working together to help these children rather than fending off persistently unreasonable behaviour and demands from a few 🙄

I work as a TA. In my school the reality for any ND child who has a history of hurting other children is that they will be shadowed closely 1:1 all day by middle aged women. Not all of these children have learning difficulties. It’s purely to stop them hurting anyone.

Does anyone think this is really ideal for a Y6 child who should be developing independence and soon moving on to a mainstream secondary school? It’s really not but it’s all we can do because we can’t have children being attacked physically in school. TAs get attacked frequently, by the way.

Yes I used to be a mental health nurse, so have had to restrain adults ,thankfully the prone postion has been outlawed