Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

I absolutely wasn’t invalidating you. Correcting your insistence you needed a diagnosis for protection under the equality act isn’t talking over you or invalidating you.

Neither did I say you could walk into work and ask for reasonable adjustments without any evidence, quite the opposite in fact, but that evidence doesn’t need to be a diagnosis.

In that situation parents need to appeal to SENDIST where SS placements are often ‘won’ and EHCPs can be fully funded. Then if the provision isn’t provided they can enforce the EHCP.

The highest banding of extra funding with an ehcp isn’t £6k, Ds is in mainstream with full 1-1 and the funding from his plan is considerably more than that (not enough to fully cover the 1-1 but add in the nominal 6k schools are expected to have then it would) - don’t get me wrong it took a lot of fighting to get that all in place and I am not disputing the system is rubbish and lets down way to many young people.

My DD in mainstream is funded just over 30k for her EHCP provision precisely because I knew what should be happening and how to enforce it.

She does amazingly in mainstream because I knew this too. The LA hate that her mainstream placement costs more than their maintained specialists but not my DD's problem.

This is like DS. He is in a mainstream secondary with a fully funded EHCP worth more than £30k. It includes full time 1:1 including break and lunchtime and therapies many incorrectly say you can’t secure for pupils in MS. He wouldn’t have it if I didn’t know what should happen, how to enforce it and advocate for him.

Sounds like our scenario, the amount of people who tried to say her EHCP couldn't be provided in mainstream. It absolutely could, with the correct funding. She is now a thriving, happy little girl.

The specialist options were less able to meet all of her needs, some could meet her autism needs but not her educational ones, others could meet her educational needs but not her social ones. Placing an anxious autistic child with no behavioural issues in a behavioural school would have been fairly disastrous too.

All children should be able to thrive and I fully support the advocating of making sure every parent knows what SHOULD happen so they can also advocate for their children. Nothing will change whilst too many parents are unaware of law vs what LAs and schools spout.

It obviously depends on area as that was the maximum that the LA said could be allocated and they're now funding an independent specialist school at £80k per year 🤷‍♀️. I'm sure they would have saved themselves £50k a year if that was an option.

What I suspect happened is LA told the mainstream schools they won't go any more funding than their maximum, those schools have said they can't meet needs. Parents didn't wish to enforce the right for mainstream (which is perfectly reasonable) and the LA shot themselves in the foot. I had to make it clear to the LA I was enforcing the right to mainstream whilst school enforced they couldn't meet needs without the correct funding. It did take us working together.

^Exactly this.

ParrotPoppy and Mumofsend - you do seem to be suggesting that parental deficits in articulating a child's needs are the reason needs aren't being met by schools?

In my experience, locally, it doesn't matter how skilled or knowledgeable an advocate for your child you are, or how well you understand equality legislation, in the current climate you still get gaslit as to the extent of their needs, and screwed over when it comes to support. That's just where we are.

And ultimately, unless you can afford to 'lawyer-up', you have no real means of enforcement.

You are quite right the law is based on functional capacity and not diagnosis, but in practice, it's even harder without a diagnosis.

Your last paragraph puts it much better than I have. Parents should be supported to challenge schools and LAs, rather than accept unlawful practices and policies. They can’t challenge what they don’t know should be happening.

Specialist wouldn’t be right for DS either. He needs mainstream with the correct support.

My BIL has obvious autistic tendencies and in fact even to outsiders is quite severe. My MIL refused to even listen to anyone when they suggested autism in a case of burying her head in the sand. The result now is a 42 year old man that still loves at home with no job or friends, who has no real quality of life. I think how differently things may have gone for him if she'd got him diagnosed and he got the support. On the other hand, my son is suspected ASD and we are pushing to get diagnoses etc so he can get all support needed in future.

Yes, perhaps this is correct. We didn't enforce mainstream as it wasn't the correct environment for our child, so we're obviously very pleased with the outcome. I did consider myself to be very clued upbthough and accepted that the additional funding the LA quoted was correct. It is very difficult to find out all the information that you need, as I'm sure you well know. The other thing (which I suspect you will also be all too familiar with) is that fighting for your child's rights often results in tribunal, which in my area is an 8/9 month wait. To get to this point your child will already have not had their needs met for at least several months, if not years. Meanwhile they fall further and further behind. We fortunately did not have to take it that far, although it was close.

It shouldn’t be that way, but sadly DC whose parents know the system and can advocate for their child get better support than parents, who for whatever reason, can’t or don’t. And there are numerous reasons parents can’t or don’t challenge and advocate for their DC - their own additional needs, EAL, MH difficulties, family circumstances, lack of knowledge (again not a criticism, but if parents were informed from the beginning what should happen they would find it easier to go through the system and challenge and advocate). That isn’t a criticism of the parents, they should be supported to.

Many parents have to appeal but securing the support is possible in every LA. You don’t have to lawyer up to secure a detailed, specified and quantified EHCP. You can go to SENDIST without and win. Both my DC have excellent EHCPs without us hiring a lawyer. It has meant a lot of work on our behalf but it is possible. There are also charities that can help and some are eligible for legal aid.

The system is ultimately very flawed which means too many children fall through the net.

for a child to get their needs met it sadly relies on them having parents who are able to navigate the complex systems and fight against the poor advice and illegal practises. That’s not a dig at the parents who aren’t able to do that because it shouldn’t need parents to do it. The systems should be in place to have an easy to navigate set up whereby no child is left behind.

i was lucky I had a primary school who where willing to fight alongside me to get the right support for DS and the mainstream secondary now so the same. No specialist setting locally could meet his needs the way the mainstream with support package can.

the best support for parents is often other parents who have been through the same battles and can point you in the right direction

LAs like to say a lot of things that aren’t correct. They often try to have their own unlawful policies. This is why parents need to know what should happen, because if they don’t and listen to the LA the LA will often give incorrect information. I agree it’s not easy and the waits for tribunal are only going in one direction, but that doesn’t mean parents shouldn’t enforce DC’s rights.

Not always but it tends to go hand in hand. Absolutely no fault of the parents and it absolutely should not be the case but LAs certainly rely on parents not knowing to get away with murder.

Schools tend to then be stuck in the middle and shafted. I have a huge amount of sympathy and respect for the schools. I go into them as part of a project I'm involved in and I think I've come across maybe 2 out of 16/17 where the attitude towards SEN just stank versus the majority who do want the best for all their children.

I certainly didn't lawyer up, I couldn't afford to. I did pay around £130 for the ipsea training levels 1-3. Sorting her EHCP and placement was brutal and the gaslighting nearly sent me crazy.They are so good at making you question it I can fully appreciate it is much easier in theory than reality. I'm not exaggerating when I say I very nearly had a complete MH breakdown. It reached a point I tipped from upset at how my 5 year old was being treated to just angry which is probably what got us through! I found everything I stated I had to specifically highlight the relevant part in law, I was told I misunderstood or was wrong otherwise.

I now run a local EHCP group and it's much easier helping other parents than doing it for my own children. I help other parents as much as I physically can so I see it day in and day out. But yes, we absolutely do need to shout from the roof tops what SHOULD happen.

This is true. Unfortunately, you would expect as a parent that professionals will give you the correct advice and act in the best interests of your child. It is a huge shock to realise that this is not the case. Parents who trust the professionals aren't at fault, the professionals are! And of course the waits for tribunal aren't a reason not to fight, but it can feel like a never ending battle, and disheartening is not a strong enough word to describe the feelings of parents in this situation.

@coodawoodashooda my 20yo son is autistic. I was really reluctant to seek a diagnosis as I didn't want him "labelled". I was wrong and seeking a diagnosis was the best thing we ever did. It opened doors to support and coping strategies that would otherwise have been closed to us.

Thank you. Can you give me any examples? Please.

@ParrotPoppy
Neither did I say you could walk into work and ask for reasonable adjustments without any evidence, quite the opposite in fact, but that evidence doesn’t need to be a diagnosis.
Do you know how you get evidence? I have a diagnosis but no evidence of it. Can I just tell my GP about it?

Working with school against the LA definitely made a huge difference here. Our LA did try and portray the school as just not wanting my child and trying to get rid of them at one point. I know the school staff well enough to know every single person who has supported by DD has given her the upmost care.

Our LA released a generic document stating schools should be doing xxx for your child at SEN support level. The provisions listed equated to thousands of ££ and was entirely written to place blame on schools for not providing these provisions. When you get digging, the practices are awful and the only people who are harmed are those children.

Do you know how you get evidence? I have a diagnosis but no evidence of it. Can I just tell my GP about it?

I have quoted my last reply in case you missed it. Some GPs would be willing to add an oversees autism diagnosis following an appointment where you discuss it, others may not, but you don’t necessarily need to prove the diagnosis, just the impairment(s). And you can do that in other ways - occupational health, school reports/IEPs, emails… - it depends on what the impairment is and your specific circumstances.

My just 5 year old DS has recently been diagnosed ASD we started the process at his 2 year review. He has an Educational Care Plan in place which the diagnosis helped with and has just started mainstream school with a little bit of help in place as that is all he currently needs.
However if that changes at any time, which it often does especially with the onset of hormones etc... we will be well placed to react and help rather than try and start the diagnosis process when he is struggling as it takes years to get through in some areas. I would say to get it done as early as poss so it is there if you need it!

Sorry not keeping track of names. I replied to your previous post. I left school 22 years ago, I only have my grades, no reports, not that I remember anything being mentioned in my reports. I have never had support or mentioned the diagnosis to any GP. I had some mental health difficulties in my teens/early twenties but I completely rejected the diagnosis until I was 25 so didn't mention it. Apparently they would have only had to keep my childhood records until my 25th birthday and I don't remember who diagnosed me.

I have only read the first page but parents who refuse to proceed with the diagnosis process are selfish IMO (as a parent of an autistic child and also likely autistic myself). The acceptance of themself that my child has and the ability to advocate for their own needs is mind blowing - I contrast that with my own teenage years where I regularly contemplated suicide as I could not understand why I was such a failure at being human. If your child was diabetic would you not label them and provide insulin in case it ‘led to low expectations’ or if they needed glasses would you refuse to have their eyes tested as they should just try harder to be able to see properly. That might sound ridiculous but it’s about enabling them to have their needs met - for every person on here who says that the school will meet the child’s need without one (ignoring that you don’t stay in school for ever), I can show you a parent whose child is not getting their needs met AND they have an official diagnosis. It has undoubtedly made my child’s relationship with their teachers easier at Secondary school!