Whole families on UC, PIP, DLA and carers' allowance for each other?

Can you provide any evidence whatsoever that that is the case?

And again, NICE guidelines commonly have more to do with cost-effectiveness rather than medical effectiveness. Where this is the case and there is plenty of evidence that a medication is effective for a condition then of course many private doctors will be willing to prescribe it.

Glucosamine and chondroitin for osteoarthritis
Homeopathic remedies and certain herbal treatments
Omega-3 fatty acid compounds for certain conditions

That isn't evidence of what you're claiming. It's just a strange list.

It is a list of treatments private doctors prescribe without any evidence based of their effectiveness

But it's not evidence of what you claimed - that private doctors commonly prescribe prescription medications on nothing more than the basis of a patient saying that it works for them. It's just a list of supplements that anyone can order online without a prescription - private or otherwise.

I wish more was done to look into childrens home lives at the time of autism assessments.

My friends sister lives exactly as you described. She never took her son anywhere to socialise as a toddler, he'd be lucky to visit the park once every 4 months. All her son has ever known is life inside a dank and depressing, cramped dirty flat with unlimited YouTube to raise him and no rules.

Now he's in school - they're saying he must be autistic because he's so unsociable, can't handle noises or stimulating situations, doesnt understand rules and has poor gross motor skills.

Its like we've stopped looking into other root causes of certain behaviours and just going straight down the ASD route every time!

Yes its effective, he no longer has muscle spasms and is able to have some use of his arms, where was before he would have very regular spasms to the point that he essentially had no arm function. The NHS provides very little treatment for his condition beyond surgery, even where sometimes medication would be more effective. Most people at his support group were funding it privately, thankfully it isn’t too expensive, I know some drugs cost thousands per month.

NICE look at cost effectiveness, not how successfully a drug treats a condition/symptom. Even cheap drugs suffer, especially when a very small group would benefit from it.

I have ASD and ADHD. DH has ADHD (and ASD imo). Both diagnosed as adults but traits obviously apparent from childhood (obvs - diagnostic criteria).

We have 3 children who have ASD and ADHD. Very different profiles. One with LDs and will need lifelong supported living. One who has the capacity to develop skills but her ASD makes change really difficult and she burns out very easily from small alterations in her schedule. One who is very able but her other issues make daily life tricky.

Despite having a child with high needs, I have, over the years, chaired a Sure Start Children's Centre Partnership Board, a preschool committee, served as a governor of 6 schools across mainstream and special provision, being parachuted in by the LA to assist struggling governing bodies, recruited head teachers, sat on the board that federated two schools, served on the Local Authority Select Committee for Children and Young People, and served as an admissions appeals panelist. I have attended every parent coffee morning and events put on by school, regardless of whether they interest me, to support the schools.

Alongside this, I have offered signposting and support to local parents who are floundering amongst the misinformation and gaslighting that is used to blame parents for their child's SEN.

I have also secured a Statement of Special Educational Needs without professional support, and two EHCPs without professional support, securing independent specialist provision where needed.

I have sat in more CAMHS, LD team, medical, psychiatry and therapy appointments than I care to remember, and have advocated for my eldest child with Social Services.

Where is this apathy that you speak of?

Do you really not consider the impact of your words when you make sweeping statements, implying that parents of children with SEN are one homogenous 'breed'?

My experience is that the parents who have more obvious needs, who have children with obvious needs, are living tortured lives. They need support, not judgement. I am still absolutely ashamed that when I was getting support from the mainstream school because DD2 couldn't attend, a less able mother was getting a court ordered school attendance order because she couldn't advocate for her child in the way I could mine. It's a disgrace.

Written by someone who knows nothing about the autism assessment process.
Just for starters - schools cannot diagnose autism.

What do you think happens during autism assessments, exactly? The home life IS looked into as well as the birth, early development, family history etc.

That is true. But the assessor can only judge based on what they are actually told. We know for example that people who drink too much lie to doctors. Why would you expect people who are bad parents to be truthful? School might know and report this, but if they don't, the assessor has to go on what they are told.

They are also given contact details for any schools, ask about any previous social care involvement etc.

Of course it relies on the parents telling the truth. The assessment also includes an appointment with the child and then an appointment with the parents. I think they are as thorough as they can be.

But I am in a place of huge privilege. My ASD and ADHD, although limiting in their ways, give me an ability to absorb and understand information in a fraction of the time many other people take to understand it. I have enough social skills to not clear a room, but I don't care so much about social standing, so I'm very willing to be unpopular to further a principle. I have the ability to argue a point, and the ability to deconstruct an argument to argue against it. I'm quick thinking and don't easily get intimidated by people with assumed authority.

The people who seem disengaged are so because they can't fight the fight. They either wouldn't know how, or their efforts would go unrewarded. If you want engagement, you have to meet people where they are at, not expect them to meet you where you are.

My son was diagnosed at three we had portage , SALT , Paediatric learning disabillity team all involved they didnt just take my word for it they observed him in his home environment

This is the problem, some parents don't tell the truth. And as much as people like to say there is barely any fraud in DLA/PIP claims, you just have to go to any council estate and you'll have people boasting to your face that they lied to claim it

The assessment does involve observing the child too, getting into contact with school etc.

DLA also requires evidence, not just a parents word.

You can lie all you want but without robust evidence you are unlikely to get anywhere

My son had been under neonatology/paediatrics/children’s services since the day he was born. Even then it took until he was nine and a half to confirm his autism diagnosis. Our paediatrician wanted to diagnose him aged 7, but couldn’t because the school refused to accept that he had any signs of autism at all. This was in spite of him having an EHCP and full-time 1:1 support. With the school stating that he was absolutely fine (!), the diagnosis couldn’t be made.

It's not a fight

Except for many, it is. For many, the system is adversarial and they experience hostility. They fight for the right support in education. Fight for the right support from social care. Fight for the right support from health. Fight for the right benefits/DFG/[insert other piece of support]. They fight judgemental attitudes, some of which are displayed on this thread, such as you shouldn’t have had DC, your family is costing the state too much money, your child doesn’t need that support, your child should stay at home and you should look after them, you just need to parent your DC, I wouldn’t tolerate that, you just need to accept help…

When people don’t engage, for many, it is can’t engage rather than won’t. The support needs adjusting so they can engage rather than expecting them to meet the support where it is. When you display judgemental attitudes instead, all you do is push families further away.

It’s not enough to say ‘my child can’t do xyz.
You need evidence. Doctors, teachers, neighbours (I know someone who approached their NDN asking them to write a quick word to confirm their dc has regular meltdowns, as heard through the walls…),teachers etc….

You need proof.

This idea tyat you can just claim xyz and it’s enough has to stop. It’s so so far from reality where people send hundreds of documents.

I think you should be hugely grateful you CAN go out, take the children out, make contact with other people etc etc
Its actually a huge privilege you only usually realise you had when you loose it, aka you get ill yourself.

Im not sure why you feel it’s ok to put down people you can’t do that. Do you think your dcs, once adults will be able to that?