Autistic women assemble!

[Nepmarthiturn]

...only if and when you're not feeling antisocial and want the entire world to +%$¥ off, or course. 😉😆

A few of us were talking on another thread and thought it would be nice to have a support/ chat thread on here to share interests/ challenges/ parenting issues or whatever we feel like. A little community of autistic women on here that we can dip in and out of but will be supportive and friendly and people who actually get it.

Might also be a nice counterbalance to all of the horrific posts about autism that we find here so regularly!!

P.S. Have deliberately posted this in chat rather than in the ND Mumsnetters topic because it will hopefully reach more people who would like to join in. I didn't even realise that section existed for a long time and often miss threads there as they don't show in active and expect I'm not alone in that. However, in posting this here, we will be relying on the people with obnoxious and ignorant views about autism who so regularly post on Mumsnet, to demonstrate to us their allegedly superior empathy (ha!) and please just leave this thread alone: it's not for you. Many thanks!!

You have my sympathy. It's absolutely trashed what was left of my health, fighting all of these people to do their jobs and being gaslit by them.

I send them their own published criteria and evidence from professionals proving unequivocally that their criteria are met. I send them excepts from the law setting out their statutory duties. They ignore me, and if pushed simply refuse to do what they are legally required to do, with no explanation. They have denied my children have any needs for support, directing contradicting the copious reports they've been sent from numerous other professionals much more highly qualified than they are.

They will force you to go through a prolonged complaints process, gaslighting you all the way, to try to get out of meeting their responsibilities which are the entire purpose of their job. Because they don't want to have to pay the money required to provide the support they are legally required to provide so will try every possible way to circumvent the law. I honestly don't know how they sleep at night. It's vile.

Their suggestion to me was that I get some parenting classes. 😡😡😡 Or go on a training course to learn about autism. The audacity of it. The implication being that it's my problem that they aren't doing their job and it must be a problem with me and I need "re-educating".

Your stage one complaint will likely be ignored for as long as possible then fobbed off with a non-response that doesn't answer the questions.

When you escalate to stage two, the Council are required to appoint independent investigators and for them to issue a final response within a maximum of 65 working days. Be prepared for the Council to breach due process and try to interfere with the conduct and scope of the investigation. And for them to ignore the statutory timeframe: I've been waiting a year for a response now...

I'm so sorry you are going through this, too. It is incredibly stressful and exhausting and overwhelming and it makes me furious.

If they put half of the resources into actually doing their jobs that they spend on fighting complaints then things would be a lot different. Instead they seem to think their job is referring you to someone else, and on and on in a merry-go-round, with all of them refusing to take any responsibility.

I think the whole lot - social services, CAMHS and local authorities - are rotten to the core and actually it would be better if they were disbanded entirely then we could all keep the tax money that is paying for this shambles and use that money to pay for the services we need directly, rather than spend years dealing with these people who seem to think their occupation is to bully and gaslight vulnerable people who are asking for help.

Sorry for the rant! But this has been one of the things making my life hell for some time now. You have my utmost sympathy.

You can apply directly for an EHCP though without the school/ CAMHS on board if you have the evidence you need so it may be worth doing that, they can't stop you. They will almost certainly reject it initially anyway no matter who does the application or how much evidence you send, it's standard practice apparently to just reject it out of hand. Because they hope you'll get so ill or stressed that you'll give up. Bullying basically.

The good news is that over 90% parents who then take them to tribunal win and get the EHCP in place (which again demonstrates that they are deliberately rejecting them wrongly when they know that it should be granted. Vile). But going through that process - the application, them delaying their initial decision (decline) as much as possible even though they know they never had any intention other than to decline it, and then waiting for tribunal, takes a lot of time. So the sooner you start the better IMO.

These people have no regard for the law, your welfare or your child's welfare unfortunately. They do not care at all about the impact of their behaviour.

@Nepmarthiturn I am very sorry. They are stealing your energy. It must be very frustrating for you.

Thanks. Sorry to rant! It is just horrendous. Especially when they know that I'm a lone parent, autistic and have other chronic physical health problems myself, two autistic small kids, a full time job, no family help. I just do not have the capacity to do their job for them also, and they know this, so they bully you in the hope you'll eventually give up asking for any help.

My kids are automatically entitled to respite per the Council's own criteria but they refuse to provide it so I can recover sometimes. They're entitled to help from the children with disabilities team at social services but they also refuse to even assess them even though I've sent proof they meet all of the criteria. CAMHS refuse to see them despite the private therapist I paid for as a stop gap stating they need ongoing, long-term support. School wouldn't put any adjustments in place without a diagnosis and NHS said they'd assess them in around 4 years so I had to get that done privately. Social services denied they were autistic until I got that done because "they can make eye contact, didn't have a meltdown during our 30 minute visit and don't have learning difficulties". Like you can't be autistic if you don't have learning difficulties and mask in front of strangers. From a professional and apparently qualified social worker. You coukd not make it up. And an operation for one DC I paid for privately as the NHS said they wouldn't do it for several years.

It is all such a disgrace. I am one person, I can't care for two kids with additional needs AND do a full time job AND effectively do another full time job dealing with these people and their nonsense and for what? Years of this now and they've still not lifter a finger to help in any way, just trashed my health more. I barely ever get to sleep, so my health is collapsing more by the week. I think there will be a special place in hell reserved for them all.

Anyway, sunny day finally! So there's that. ☀️🤣

They're exactly like those bastards at the DWP who refuse to give people PIP unless they go to a tribunal.
It's almost the same statistics, too.
Over 70% of claimants who take the DWP to a tribunal are awarded PIP.

Although only 10% of the claimants who are denied it initially actually go to a tribunal.
The rest just give up, and that's what the DWP want to happen. It saves them a fortune.

Yes, that seems to be exactly what Councils do when it comes to disabled children's educations, pushing many of them into complete mental health collapse.

I really do not know how these people sleep at night.

Oh good lord @Nepmarthiturn - that's horrendous, and I can imagine the complaints process is rubbish. But I'm not going to let that shut me up. I'm furious. Don't get me wrong, I'm not going to sit on my hands with regards my son. I’m going to get whatever evidence I can from any other source and keep pushing as far as I can. I may be depleted, but nothing gives me more energy than unfairness.

And the learning disability thing gives me the RAGE. I have an IQ of 143 and am not learning impaired. I am also autistic. Yet I get spoken to like a five year old and they don't like it when I argue back with them about this.

Yes, I get infuriated by that, too. My IQ was 164 when it was tested but probably lower now due to decrepitness and the zombifiying effects of prolonged lack of sleep. It's always either "you're not autistic because you make eye contact and aren't having a meltdown in front of me", or "you're autistic? You must be really thick and I'll speak to you like a child."

So tired of the world right now. 😡

But sorry for turning the thread into a rant! I think @AuDHD4Me your post was like a match setting me off because I have been living the same. I do hope you get some help for your son somehow. There was a load more of it for me to deal with today that has taken up maybe 3 hours of my time, again. We fight and fight for our kids but it shouldn't be like this. 😕

I hope other people's days have gone a bit better!

@Nepmarthiturn never apologise for a good rant. It's awful but knowing we’re not on our own is somewhat comforting if not frustrating at the same time.

Moving on to more menial things, what's everyone doing this weekend?

AuDHD4Me

Thats awful. Is there anything in his autism diagnosis report that would support an adhd diagnosis. I was put forward for my adhd diagnosis in the back of my NHS autism diagnosis.

Nepmarthiturn

I hear you. My neurodiverse daughter has been off rolled her college course and we’re currently going though shitty tactics like that with the college complaint procedure.

I’m so sorry for those that are being so let down with regards to education. Reading your accounts is heartbreaking. How the hell you keep pushing through I don’t know, you’re amazing women. Ranting here is good, we’re all listening even if we can’t actually help.

@Furries thank you for those kind words, it means a lot. It's difficult to be positive about your efforts sometimes when you get so little movement.
But we are all amazing. I'm giving everyone here a virtual medal.

Me too! I'm thinking of carrying my Mensa cert around with me.

He was referred for both at the same time. Services are so stretched here its insane. Feeling the only option would be to go private.

Thanks @Furries . Good to have a vent now and again!

Sorry you are going through similar, too, @RhubarbandG1ng3r . It all makes me so angry, and I'm usually a very calm person.

@AuDHD4Me great idea to present your Mensa certificate to people when they are ignorant. 🤣🤣 Today I'm getting stuff ready for my daughter's birthday party tomorrow. 🎈 What are you up to?

@AuDHD4Me just be careful with a private diagnosis for ADHD because some NHS trusts refuse to prescribe the medications unless you have an NHS diagnosis. 😒 And paying for private prescriptions each month is £££. School/ the LA would still have to accept a private diagnosis though, so it might help with that. So ridiculous to end up having to pay for all if these medical things ourselves.

Sorry, it was @StopStartStop who said about the Mensa certificate. Not with it today, clearly! 😵‍💫😆

One of the things mentioned as to why they wouldn't award me PIP was that I had qualifications, I went on a massive rant in response about how ignorant they were about autism and how it showed that they are not qualified to assess people when they directly link someone's intelligence to how disabled they are.

I have had to fight for absolutely everything for DD, even her GCSE's she was screwed over really badly as it was on the back end of covid and TAG's were used, for example she was predicted a 6 and was awarded a 3 with no explanation why. They didn't do any exams so how can a teacher say she's working at grade 6 level in February(last report) and then on results day she has a 3. I had to get a solicitor involved to get her grades put back up (and the school tried to shrug it off as a system/admin error). I know they put her grades down thinking they could get away with it, they bumped up everyone's grades and so to even it out all the additional needs kids got lesser grades. I know because some of her friends who were predicted to not pass most/all subjects passed everything(like one friend predicted 2/3's across the board got all 4's and 5's) and others who like DD were predicted pretty good grades(some much higher predictions) failed everything the difference being whether they had additional needs or not. The solicitor was shocked by how obvious it was and afterwards she advised me that I had a very good case for disability discrimination over DD's treatment whilst at that school but I just didn't have enough fight for that alongside fighting for her further education.

I volunteer for a charity that helps parents with disabled children and 90% of the problems parents come to us for is to do with school. They make it so hard for everyone involved, the system is ridiculous. For example, because they failed to give DD support for so many years she can't cope at all in mainstream (or anywhere with a large number of people) and she ended up at a specialist MH school that cost them around £20k a year. I've been battling the LA this year to get her on an online diploma course and because they dithered so much the cost has more than doubled. If they had just given her support in secondary in year 8 when she needed it she wouldn't A) be in the state she is now and B) wouldn't need such expensive support.

I hear it all the time via the charity, schools/LA's not offering the right/enough support fast forward a few years and the child is so traumatised they need even more support at a higher cost, makes no sense the LA/school's just cost themselves more money in the long run but the worst thing is the price our kids have to pay.

@Nepmarthiturn I know some do, our GP is ok with shared care, been through this with DD17. Still shouldn't have to do it this way though.

@camelCase that is HORRIFIC 🤯
Jeez, if there was an island going spare I would set up a separate country for us. It would probably work better.

Lego and books today, all Ihave the headspace for. You?

That's why I don't tell people. The patronising way some would speak to you, or the stereotypes applied to you. I don't know which was worse.

Means you can't access help as the downside of not sharing that information. I find prolonged eye contact and 'masking more difficult to maintain when I'm having a stressful day - so it would sometimes be helpful to have people know.

I am relaxing with a glass of sherry at the moment
I can't think of anything about which I want to rant.

Watch this space, though.

I do love a good sherry!