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?

Exactly.

Parents should be supported to understand the law and how they can challenge the LA via SENDIST as SENDIST certainly don’t require a diagnosis.

Documented proof doesn’t have to be a diagnosis. Both of your scenarios could occur without a formal ASD diagnosis.

There are many ways to prove an impairment without a diagnosis.

A diagnosis opens the door to more help. The other part is parents being open to looking at specialist placements. If your child is struggling on mainstream you need to be the person who pushes for professional assessments or who goes to other schools and sees what is out there. I have come across children who even with support from a TA and other adaptations are not thriving. They are unhappy and uncomfortable in a large busy school that is not set up to meet their needs. Often they are three years or more behind their peers and it is not good for them. They often have vague ' social and communication needs' identified as their parents have not sought a diagnosis. Yes a diagnosis would help open the door to a more appropriate provision. My children's asd specialist school requires a diagnosis of autism for entry.

The vague needs and provision in EHCPs isn’t due to a lack of diagnosis. It is due to vague, woolly &/or absence of reports from SALT, OT, EP. It is more than possible to have a detailed, specified and quantified B&F without a diagnosis.

With the exception of admission to specialist ASD schools that require a diagnosis and sometimes LA’s specialist autism teaching service, EHCPs are based on needs, not diagnosis.

Or you have schools who claim that your child is not classed as a "priority", which locks them out of support completely. Without a diagnosis, what hope do you have?

which locks them out of support completely.

No it doesn’t, it may mean parents have to enforce their child’s rights, but they don’t have to accept the school’s decision.

Schools do break the law, every day. I’ve worked in mainstream secondary education for 20 years. Things have never been worse. There is not enough funding. There are woefully inadequate resources. The school I work in currently has to fight to get the EP in once or twice a year to see a handful of children.

EHCP applications are routinely turned down. In my borough, without a diagnosis, a child will not get one. It’s that simple. There are too many children WITH diagnoses fighting for one for the LA to be bothered to consider giving that money to those without.

Even for the children who get an EHCP, getting adequate funding attached and good quality expert advice written into it is very, very hard.

Then you have to look at how mainstream schools actually use the funding that comes attached to an EHCP. A lot of schools (I would say the majority of secondary schools) use the individual child’s funding to fund TA support that they then spread thinly among children without an EHCP, often without a diagnosis, but with significant needs.

Is this morally wrong? Is it illegal? Yes.
But this is the reality of mainstream SEND provision in England, at least.

In my experience, only children with vocal, educated parents who fight tooth and nail to get a diagnosis, get an EHCP and hold the LA and school to account at every annual review get the support they need and are entitled to.

It’s a bleak picture.

My child struggles to stay focused, and is very impulsive. Apparently "just about managing" is fine for him. They say they address his needs, they are assessed regularly like all other pupils.

Without a diagnosis, I don't see how the situation for him will change.

I don't want a child to "just about manage" I want him/her to thrive.

I thought that DD2 might have ASD when she was still quite small but DH didn’t agree. She was doing fine at school so I didn’t push it. I wish I had.

She found secondary school increasingly difficult and then had a full scale mental health crisis in GCSE year that we are still clawing our way back from. She still doesn’t have a formal diagnosis (5 months to go on the waiting list) but every professional who’s seen her is pretty certain that ASD is at the root of her anxiety. She is desperate for a diagnosis so she can have proof that she’s not just ‘weird’ and so she can have a shorthand for explaining herself to others.

Conversely, her elder sister also shows some autistic traits. I have asked her if she’s like an assessment but she doesn’t want one. I won’t push it but let her know that it’s always an option open to her if she changes her mind. I was very similar to her as a kid and it would have made so much difference if my parents had recognised the differences I saw in myself.

There are so many kids these days with diagnoses of neurodiversity that there is no judgement from their peers. It’s not something to be scared of.

Parents don’t have to accept schools and LAs acting unlawfully. They can challenge it, and it doesn’t require a diagnosis to do so. As you say DC whose parents who know the system and can advocate for them get better support. But all parents should be supported to advocate for their DC.

In my borough, without a diagnosis, a child will not get one. It’s that simple.

No, it’s not. EHCPs are based on needs, not diagnosis. Parents can challenge a refusal to assess or issue and SENDIST will not consider “they don’t have a diagnosis” to be an acceptable defence.

Then you have to look at how mainstream schools actually use the funding that comes attached to an EHCP. A lot of schools (I would say the majority of secondary schools) use the individual child’s funding to fund TA support that they then spread thinly among children without an EHCP, often without a diagnosis, but with significant needs.

Again parents should be supported to enforce the EHCP.

Ds got his ehcp before he had the autism diagnosis. However the information we had from the ongoing autism assessment certainly influenced the plan and the main reason we got one was the Ed psych report school had commissioned knowing the issues we where facing.

however if a parent is dead set against embarking on the process of a potential diagnosis would they agree to the level of assessments and observations needed for an ehcp to even be considered? The bar may be set pretty low of the needs assessment but for a plan worth its salt to be put into place there will be a lot of professional reports highlighting the areas of struggle

I'm very very glad both of my children are diagnosed.

They are both well supported in school regardless of diagnosis. However, it really benefits their sense of identity, not thinking they are stupid. It helps people be far more understanding.

It isn't about labelling them but ensuring they can access the full support and understanding. I think it's selfish to deny a child that.

So, enforce his right to support then, you don’t just have to accept it. A diagnosis doesn’t change his needs and schools must make their best endeavours to meet a pupil’s SEN - diagnosis or no diagnosis. Parents can also get an EHCNA when schools could do more but won’t. Schools often try the “managing/coping/fine” line, but parents can challenge it. You can get an EHCP when the school think the pupil is managing/fine/OK, when in reality they aren’t.

And both my DC had their EHCPs pre-diagnosis. DD received her EHCP January of reception year, her diagnosis came about 6 months later. DS was given the GDD label at 3 and his EHCP just after he turned 4 ready for school. EHCPs are needs based.

@ParrotPoppy It isn't very helpful that you keep posting what should be happening to support children. We can all regurgitate the internet about what should be happening.

You have already posted over the actual experiences of a few PPs on here.

Do you understand that you are constantly dismissing and invalidating people's actual personal experiences of what happened to them? Do you understand that your "shoulds" have no relevance when someone is desperate and is needing to be heard?

We waited until diagnosis to apply for an ehcp as school told me Ds wouldn’t get one without diagnosis and I didn’t know any better at the time. Then when we did apply after diagnosis we still got refused as the la said it was a new diagnosis and they wanted to give time to see if things magically improved now he had a diagnosis. He did eventually get an ehcp but by the time we got it things had got too bad and he still didn’t manage in mainstream. Now doing well in a specialist asd school.

You're assuming only parents push for a diagnosis when usually the DC has a lot of problems that leads into medical investigation and eventually leads to a diagnosis.

I had no idea my DD was on the spectrum. I thought she had an awful attention span and naturally clumsy with no planning skills like me.

Age 6 after 2 year in school they realised she was masking and not learning she has never acted out or being destructive, she is so good, now 14 a introverted quiet teenager.

DS OTOH cried with sensory issues from birth all day and everyday to the point where I wanted to die.

If he wasn't crying he was groaning and had a severe unhealthy attachment to me, he was put out of childcare at 10 months, my Dsis agreed to mind him she couldn't cope after 7 months I had to leave my job.

This continued to aggressive, stereotypical autistic behaviours, he is very antisocial and I fear he has a personality disorder not only autistic.

How do you know I don’t have “actual experiences”? You don’t. In fact I do. I am autistic and have autistic DC with EHCPs.

I am not dismissing or invalidating anyone. Pointing out they are wrong to think a diagnosis is necessary to be covered by the Equality Act or for support in schools is not dismissing or invalidating them. It is pointing out the law.

Yes, it is helpful to post what should happen because if one doesn’t know what should happen how on earth is one supposed to enforce your/DC’s rights and advocate for yourself/them. If I knew at the start everything I do now about what should happen our ‘journey’ through ‘the system’ would have been much easier and less work.

There is a vast gulf between what should and does happen.

Yes, parents have the right to and should challenge schools and local authorities when their child’s needs aren’t being met.

The reality is that many parents: don’t have the knowledge or information to do that; or don’t have the energy or time in as they have other children, full time jobs etc; aren’t educated, articulate, confident in challenging authorities; English isn’t their first language etc etc.

I’m not talking out of my area, here. I’m SLT in a school. I also have a child with autism.
I’ve seen this from all sides, and it’s a system that isn’t fair and a lot of the time isn’t legal.

Schools, LAs, allied professional all know this. There is just very little anyone can do about it.

I had to lawyer up and raise merry hell to get my child the support he needed. Even then , it was very far from adequate. Without a diagnosis I would have had fuck all chance of getting what I did get, no matter what the law says.

Area = ARSE 🤪

@Haffiana

Thank you for recognising what that poster has been doing. Even when I said I felt I was being talked over and invalidated they came back to tell me they were not doing that - which actually proved they were doing exactly that.

I had to step away from that interaction because no matter what I said it was rubbished in favour of 'the law' - the law is all good and well but realistically people have to fight hard for support even WITH a diagnosis, we all know jack shit is happening for those without.

Laughable that someone thinks I could walk into work and ask for adjustments with absolutely no evidence of needing them. This is why I don't work by the way, because I did not have the understanding or support that I so desperately needed. The law

The reality is that many parents: don’t have the knowledge or information to do that; or don’t have the energy or time in as they have other children, full time jobs etc; aren’t educated, articulate, confident in challenging authorities; English isn’t their first language etc etc.

I agree, DC whose parents who know the system and can advocate for them get better support. Which is why it is important parents know what should be happening because if they don’t know what should happen it makes the situation even harder. All parents should be supported to challenge schools and LAs. There is help out there parents can access for help, e.g. there are charities that can help (including by funding independent assessments or providing a caseworker), there are many groups within the ‘SEN community’ that can support, many parents don’t realise they may be eligible for Legal Aid… Assessments such as Ed psych/SALT/OT can all evidence needs without a diagnosis.

^ This.

Posters can bang on all they like about the law, but the reality is that there is NO FUNDING. My child's previous mainstream headteacher has been told there is no additional funding and no additional special school places. Every child is expected to remain in mainstream. People have no idea about the reality of SEND provision. The latest teacher pay rises that schools have been told must come out of existing budgets are also having a huge impact. The highest band of ehcp funding is an additional £6k. How far do you think this goes on funding an additional TA? It's an awful situation, at least in England. I thank my lucky stars that my child's specialist placement was agreed last year.