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?

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.

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.

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.

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

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.

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.

"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.

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

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.

Exactly this. We lose people year on year. I was in training sessions in the spring with several senior NHS professionals who were preparing to jump into the private sector. These people will take decades of experience with them because they have decided enough is enough and they want the autonomy to choose who they work with. They are burned out working in the public sector with outrageous demands and a shoestring budget and dealing with the utter entitlement you describe and I described upthread. They have decided to finally put themselves first but are struggling with the moral injury of knowing they are walking away from terrible need.

I am seeing this across multiple sectors. It is a tragic waste of highly skilled people. I'm sorry you experienced this.

I really shouldn't read these threads on a Sunday night! Monday mornings in December are hard enough!

@SquirrelSoShiny

I was in training sessions in the spring with several senior NHS professionals who were preparing to jump into the private sector. These people will take decades of experience with them because they have decided enough is enough and they want the autonomy to choose who they work with.

Yep, I'm one of them. Made the jump into teaching on the DPsych programmes first, then into the private sector where I now work in clinical L&D.

They have decided to finally put themselves first but are struggling with the moral injury of knowing they are walking away from terrible need.

This, exactly this. Thank you for getting it 💐and sorry you're losing all that badly needed experience.

I guess when I read some threads on here though, the sense of moral failure abates somewhat when I realise there's an army of armchair diagnosticians on parenting forums who are convinced they can do a much better job of it! By all means, they are very welcome to deal with all the things we did on a daily basis - crack on!!

Can I just check that this is what you are saying:-

• A child/ yp who already either has or is suspected of having nd (so already been assessed in someway either formally or informally) has reached the threshold for camhs intervention (most would agree that this is usually a ridiculously high threshold due to staff/ budgets).

• some of the parents are burnt out from getting to that stage having already been let down by professional, school, nhs, other agencies etc.

• some of the parents are partially contributing to mh issues by not taking responsibility for their inability to interact with professionals who they're looking to for support or to understand why their c/yp requires mh intervention. They're taking them to casmhs because the parent doesn't have the skills or now how to help their child.

• This was also happening on a regular basis, so much so that you left the nhs.

• The parents/carers are the ones in the wrong?

If the parenting was so bad that the c/yp got to high tier mh support as a professional involved surely it would fall back on you to ultimately support the c/yp and involve other agencies if necessary (cin/ cp)? Do the professionals involved who either have already failed the family or can't communicate effectively with their services users shoulder any of the blame?

I can imagine that one parent in blue moon may be "a victim of their child...." as you say but so many that you need to leave the nhs and they are the sole or primary reason for the decision?

But you get that everywhere and isn’t just amongst struggling parents of NC children who it’s widely reported are being massively let down educationally, by CAMHs, the nhs and services as a whole. The inference by some that parents of nd children as a group are unpleasant is pretty shit.

You said entitlement and unpleasant parents were the minority- make your mind up.

@ChristmasGrump5 and @Perzival

These kinds of families are the minority, but you spend an awful lot of time on them. Having meetings, trying different things, placating, responding to vexatious complaints...

It was a contributing factor, but not the only reason I left the NHS. Underfunding, ridiculous expectations, politics, asking more and more of assistant psychologists, counsellors, trainees etc, who aren't really skilled enough to work with the level of complexity they were being asked to, then blaming them (and us as supervisors) for not meeting targets. Burning staff out. And yeah, the small but vocal minority of parents who unreasonably and unpleasantly to professionals who are mostly doing their damnedest to try and help. We were all dealing with a broken system.

Note I say "behaving unreasonably and unpleasantly" rather than calling them unreasonable and unpleasant people. Perhaps in another context they'd have behaved differently and I'd have had a different experience.

I'm a parent of two ND children myself, so I'm not saying (and have never said) that as a group all parents of ND kids are awful. I also did say that it was not only parents that could be problematic.

some of the parents are partially contributing to mh issues by not taking responsibility for their inability to interact with professionals who they're looking to for support or to understand why their c/yp requires mh intervention. They're taking them to casmhs because the parent doesn't have the skills or now how to help their child.

Well yes, you're quite right - in which case, the wise thing to do would be to actually give the professional the time of day instead of fighting them at every turn. People can't say they need help, then as soon as they get it, tell you that whatever you're about to say or do is likely going to be shit anyway. Or say that you can't do any of the strategies at home because it's too hard and then get mad at a professional for telling you that therapy is therefore not likely to be effective. Or tell you they know their child best, and whatever you're proposing won't work. Well ok - why are you here, if that's the case?

Only so long you can bash your head off a brick wall like.

But you get that everywhere and isn’t just amongst struggling parents of NC children

I can absolutely confirm that you do indeed get people everywhere who are more challenging to build relationships with in mental health and similar settings. You do not, however, get it on the same scale in other settings as you do in the NHS.

“You do not, however, get it on the same scale in other settings as you do in the NHS.”

You absolutely don’t know that, try working in education. And again that is not specific to parents of autistic children so pointless to the discussion.

More than sick and tired of the martyrdom and expectation of shit needing to be accepted within the NHS because it’s the NHS. Autism varies but the fact remains autistic children and adults are more likely to be let down and not have their needs met.

”Having meetings, trying different things, placating, responding to vexatious complaints..”

You’d hate me, I’m one such parent. I have made several complaints re provision and handling of my dc within the NHS and education because the experience within both has been dreadful. Re the NHS, staff within the system felt the same as me and I had support from professionals each time I made a complaint which were upheld.

When you have dc continuously in hospital or at serious risk, dc who are having treatment that clearly isn’t working and keeps them locked in a dangerous cycle and isn’t being adjusted for their ND, when you are not being heard as a parent and carer, have paltry tick box reasonable adjustments that do exist ignored, are treated abysmally in meetings to the extent you and your partner require therapy further down the line, when you are patronised and you see treatment not just not helping but damaging your child even though you’ve tried your best,when the service you’re getting is appalling, disorganised and you’ve consistently been patient you have every right to complain.

So so many parents walk in our shoes with some experiencing far worse. The alternative to not complaining or advocating for your child is a dead or damaged child and a service that just sits back on its shite laurels and doesn’t improve. The NHS isn’t untouchable or above scrutiny. The arrogance shown by some staff within it is dreadful and it’s the more vocal parents like me who end up changing things. I’ve met staff like you and I’ve also met many many other parents like me who have experienced similar. We litter forums and support groups. Thankfully I’ve also met staff and professionals who don’t blame and patronise parents;staff who are honest, supporting, understanding, kind, vocal and knowledgable about the true realities of caring and supporting struggling ND children. Sadly they are in the minority but seem to be the ones that stick around trying to change from within.

You absolutely don’t know that, try working in education. And again that is not specific to parents of autistic children so pointless to the discussion

I did work in education. I started as an ed psych, actually.

The NHS isn’t untouchable or above scrutiny. The arrogance shown by some staff within it is dreadful and it’s the more vocal parents like me who end up changing things.

There we can agree. I did support plenty of complaints that were fair. And I tried, I promise you, to change things and challenge the snail's pace of change, bad attitudes from staff, etc. For many years. Plenty wrong with the NHS, and if there wasn't I'd still be there.

I’ve met staff like you

You don't know me and you don't know the half of what I experienced in CAMHS.

If you genuinely were a parent who was vocal because your kids hadn't had help, and you had been let down, then I'd have been supporting you as much as I could. I often wasn't popular with management either because I was prepared to call it out if the service had got something wrong. Autistic sense of justice and all. I don't believe in closing ranks.

That doesn't take away the fact that there were families who treated us poorly and we rarely had any protection from that. You think it was fine for a parent to put in a complaint about me when they didn't get the diagnosis they thought they should get and state that I must have got it wrong because "that one's a r**d herself"?

As I said it was a minority but it's a minority I no longer want to or have to deal with.

It's really telling that I've made comments on here about anti autistic ableism from parents of ND children towards me as an autistic psychologist and a few people have come on here to basically go "obviously that doesn't happen and if it did then you clearly deserved it because you were shit at your job".

I won't come back to this thread now, because I'm pretty fucking angry at that, to be honest. Fine, all parents of ND kids are saints, professionals are all useless and enjoy not supporting you all, so it's fine to shit on them, and I'm lying about the horrible ableism from a handful of them, that not a single one of them was asked to apologise for because it's the NHS and there are no consequences for treating staff like shit.

“You don't know me and you don't know the half of what I experienced in CAMHS.“

And you don’t know the half of what other children and parents of children with ND have experienced.

But, in all fairness, I imagine that poster came across far more parents of ND children in her job than you did in your day to day life.

@Crazycatlady79 my issue with your previous posts is the distain that comes across for parents that you previously interacted with. I read your previous posts and took away from then that you and the other poster were squarely blaming parents for the problems that you faced in the workplace. You didn't really acknowledge the failings of professionals and their contribution to the situation you were talking about.

While most professionals in the nhs and local gov who work with families in difficult circumstances, try their hardest their goodwill and persistence to work within their role constraints (as in local proovision/funding/ local policy) actively contribute to failing familes:-

• Not specifying and quantifying reports and detailing all needs.
• Making do rather than referring to specialised services or highlighting that specialised assessments are required.
• Sharing provision that is meant for one particular child (TA's are a common example of this where 1:1 is specified).
• Telling parents misinformation because they are limited by the service they work in or by what is offered locally rather than what the child really needs.
• Parent blaming when they get it wrong rather taking responsibility.

These and others happen time and time again.

Parent blaming is an interesting accusation. Maybe sometimes a justified accusation?
I used to know a woman who had an ND daughter with mental health problems. She constantly complained that any services she had contact with blamed her parenting for her daughters difficulties. The reality was that she was advised to change some of her parenting to better respond to some of her daughters difficulties. She simply refused and ended up discharged from all services who simply could not work with her.
ND can be real, but if parents have not already, they often do need to adapt their parenting to meet the needs of their ND child.

It's interesting and I do know parents don't always do what is best for their child I'm not debting that (multiple reasons; their own send, stress, not understanding systems etc). Parent blame is real, this plays out quite often when parents find themselves facing fii accusations around the time of tribunals. The majority of parents want what is best for their children.

The vast majority of send tribunals are won by families with private reports usually being sourced because the LA/ NHS reports aren't fit for purpose. Very rarely are professionals held to account for this because essentially they are doing their job in keeping costs down for local services (my opinion).

I do know of a Psychologist, OT and SaLT who set up their own provate company after working together for camhs. Between them one of them left completely and the others reduced their hours. The reports they write privately are adequate for basing the ehcp on, their reports in the NHS are lacking.

There are whole businesses now just to provide reports for tribunals so that educational needs and provision can be made. It's shameful.

I

It is interesting that parents are set up to take sole blame when it's openly acknowledged that the send system is breaking, LA'S and NHS are broke and schools are on their needs. Autism especially is a disability in some cases completely debilitating. If a child was diabetic for example and acted out in school because they were hyper the conversation would be different.

@Perzival If a child with diabetes was frequently acting out in school because of a hyper, the school would be asking what the parents are doing to manage their child's condition and whether they have sought medical support to better manage it.
Most medical conditions and disabilities need managed in some way. Most parents do this, but not all.