To be so worried re EHC Plan

[WayneCampbellsSidekick]

My 3year old son is having an application made for an EHC Plan on the advice of his preschool following a visit from the local SEN advisor (high functioning ASD).
Am I right in saying they would only be doing this if his needs are deemed to be severe? So many questions and worries. Desperate for reassurance and advice/insight - is anyone who has been in this situation able to give any please?

I find it interesting that the debate is usually about high functioning and low functioning as if there isn't a middle ground.

This graphic is helpful.

My 14yo son can pass as “high functioning” or even neurotypical- but inly because we have curated and managed his life, environment, school, advocated for him, taught him to self advocate, manage his sensory and social needs daily, plan for every eventuality, etc etc so that his needs are met most of the time. He still needs a lot of down time as all of the “high functioning” and masking takes its toll, and that’s what people don’t see. All of the accommodations and thought and effort that makes it possible.

But if anyone saw him in meltdown, or suicidal Autistic burnout (at age 11), not at school for a year, depressed, a shell of a boy, they would absolutely not describe him as “high functioning”.

Some Autistic people’s challenges are external and visible, others are internal. No two Autistic people are alike. And their “functioning” can change day to day - just as neurotypical people’s can.

Just to add, Asperger’s has not been a diagnosis in the DSM-5 for a decade. Dr Asperger was/is controversial as that diagnosis was originally used for Autistic people who could still be “useful to society / the economy” instead of locked up in institutions or asylums. He was also a N*zi. Just giving some background on why a large part of the Autistic community balk at the label, which is their right. I personally don’t believe in telling anyone how to describe themselves, but some context to the wider conversations will help with understanding.

The problem with low and high function is that it’s often used as a term to denote how academically able a child is, which does not necessarily correlate with their life skills or other challenges. it’s wildly simplistic and doesn’t really aid with understanding what support that person needs or their gifts and strengths.

You can be a person who finds learning hard but is less impacted by sensory issues or is socially more able to interact with non autistic people (this may come at a mental health cost… which is another thing!).

You can also be MENSA level acdemically but struggling to manage day to day due to the environment or expectations of others. Autistic people (including children) need to be understood for all their strengths and support needs.

The terms are inaccurate for that reason but frequently used by schools and professionals so we absolutely shouldn’t be having a go at parents who use terms they’ve been told.

My daughters were termed as level 1/2 but I know of other children who are level 3.

The EHCP can be fantastic to make sure that school is able to meet your child’s needs and get any additional funding and resources required for this.

Ah I think perhaps my post wasn't clear. They do have autism which is "high functioning", diagnosed when children. This was originally called Asperger's which I know is a term that was fallen out of favour, but they use this term themselves to describe themselves. Another poster said that certain labels are insulting to austistic people but I think people have the right to use what they feel best fits their condition.

Thank you, that graphic is helpful.

It's great they are already setting it up for your ds to receive the support he needs.

My ds has asd (camhs even described him as what people call HFA rather than Asperger's 🤷‍♀️) and a neuromuscular condition.

It's nothing to do with functioning or IQ (my ds iq is really high) but rather where the support is greater than usually provided under sen support in schools.

Everyone is different but despite having an EHCP through until he finished college my ds has 10 GCSEs 9-4, equivalent to 3.5 a levels at grade B and a level 4 qualification, works in computers at a high level and competes for Britain in his sport.

Despite being highly intelligent he has severe problems in some areas of learning and academically needed support to communicate his knowledge and learn some skills required for adult life.

An EHCP is no indication of prognosis. It's to enable young people to meet their own personal full potential.

Don't be scared off @WayneCampbellsSidekick

As you see, there are some contested issues around autism, but the key thing for your DS is on track to get the help she needs and get it early. Which is huge.

Thankyou everyone for your replies and reassurances. So many different scenarios running through my mind. So now the preschool are requesting the EHCP, what are my next steps? Is there anyone’s door I should be hanging on? Thankyou again for all your responses, I’m very grateful for any advice and insight xx

Banging not hanging! 🙈

Nursery should fill in the forms for the needs assessment application with you involved.

ipsea have a good guide to the process. At the moment you’re applying to them to ask them to assess him for a plan. The bar for that is pretty low but most get turned down - don’t be put off by that apply for mediation and go to tribunal if needed. The success rate at tribunals is massive because most are wrongly turned down.

when they have agreed to assess the LA will ask for reports from a range of professionals including an educational pshycologist - this is handy in itself as it can help give you a better insight into how to help him.

when the reports have been done they will then decide if they are going to issue an ehcp or not. Again be prepared to appeal if needed.

it is a minefield but will be worth it in the long run.

https://www.ipsea.org.uk/ehc-needs-assessments

Your local authority should have a "parent partnership service", which is designed to help parents understand the process and offer advice. They're funded by the LA but their advice is independent of the LA.

Making contact with yours would be a good place to start.

Thankyou for your replies. He has not been seen by an educational psychologist- how is this usually organised?

Usually the school or local authority will organise all the assessments (once they agree to assess in the first place), but it’s good to chase them up as they can be slow. There is a huge backlog and waiting time for Ed Psychs at the moment - be ready for this to be a loooong process.

the IPSEA link that a previous poster gave will answer all your questions.

I think it’s really great they’ve identified that extra support might be needed this early on, it’s always a good thing for the child and gives you some real leverage later on if you need to make applications in his behalf for school places and additional support and therapy. My son is still waiting for these things because our area is shocking for wait times. Although he was lucky enough to land in the right school for him after I hounded the council for months and built a rapport with their SENCO he’s thriving.
As for language around autism, I like to use a sort of shorthand for my son with colloquial terms mixed in, so ‘my son has ASD, he’s clever, verbal and sociable but has sensory issues and is a pedantic and stubborn ‘little old man’. It honestly sums him up well and is personal to him and presents his needs openly without comparing him to other boys on the spectrum. My SIL will describe her son as ‘very autistic’ which to her means that he stands out as ND and perhaps that’s less PC but she’s the one fighting for her life every day to keep him well and meet his needs so I think she can say what she wants tbh.
main thing is with these boys is that we keep pushing to give them the best lives they can have, whatever that looks like.

This is exactly how we describe my DS14 - not mild or very / high or low functioning (simply because they don’t really help someone understand his needs at all).

So it’s “My son is Autistic” and if they need more, “for him that means he struggles with xyz sensory, he needs routine, consistency, predictability and calm. He is very black and white, and needs time and explanations in “grey area” situations. It also means he has an encyclopaedic knowledge of xyz, he is bright, honest, sociable and direct with a brilliant sense of humour. XYZ causes him overwhelm or meltdowns, and he needs xyz to recover. He masks in school but this drains him so we factor in regular recovery time….”

Saying “my son is HF” would be utterly meaningless.

@Sensibletrousers
totally agree. Our boys sound quite similar from your summary. If you were coming to my house for tea I’d know what to expect and I’d I might swat up a bit on his special interests so that I could enjoy chatting to him. Similar to how I work things when DS is off to meet new people. I warn them they’re in for a lecture about this and that and that he prefers playing with younger kids sometimes but can also latch on to an adult and chew their ear off depending on his mood :) also the sensory stuff can usually be well managed too like him needing to have certain clothes to wear after swimming or using sunglasses and ear defenders indoors. It’s useful info relevant to real life rather than labels.

I'm not sure if this has been mentioned already but in recent training I have seen this referred to as a spiky profile which I think makes it so much easier to understand

Thankyou again for your replies. I think something that is bothering me is, having heard how many children aren’t diagnosed until they are much older, does the fact he is already “in the system” at 3 mean that his needs are very significant in that they haven’t gone undetected? I just want so desperately to know he will be safe and happy, loved and accepted and well treated by those around him as he goes through life.

Needs change all the time. One of mine had nothing significant to note until they were 6 (i mildly suspected it before then but only because I had diagnosed children already) - she is unrecognisable now at 13 and cannot be left alone at all. Her needs are high. What I'm saying is age if seeing the signs doesn't really correspond to 'severity' for want of a better word. Aside from anything else we know so much more now and pay much more attention to the little things that previously would not have even been noted. I think you have to take the positives here tbh, the child I spoke about above I had to fight long and hard to get diagnosed and she was 9 when that finally happened.

The bonus of being in the system at a young age is that he is less likely to fall through the cracks. You will be aware of his needs and how best to support him which will help you advocate for him.

ds has been in the system since he was 4, diagnosed officially with autism at 7. At 13 although he has very high levels of support needs that support is in place meaning he is able to work to the best of his potential.

i know parents of some of his peers whereby the needs only showed themselves later, they are still sat on waiting lists for assessments, diagnosis and help to access support. For them sadly at school things are rapidly falling apart because their needs have been under the radar and as such unsupported for so long.

diagnosis isn’t some sort of magic solution but having the awareness helps massively with fighting for what is needed.

Hi OP, all it means is you've got a nursery that are on the ball. Everyone should get this, but the way the "system" works in this country is that it is basically left to parents to amateur diagnose and then apply money and/or years and years and years of trying to get professionals to actually do something.

It doesn't mean your son's needs are particularly severe. It means there are lots of children and young people out there not getting help because professionals are poorly trained, overloaded or oblivious and parents' concerns were ignored or dismissed.

My daughter's 10. She was a delightful, easy baby. Pretty "normal" toddler and then between 3 and 6 it became more obvious our experiences were diverging. Diagnosed at 7 (I organised and paid for this - thanks to Covid even if I had been able to get the NHS to do something there were no services). Noticeably different to peers from 7-10. Finally saw an NHS paediatrician this year (so 4 years after being sure something was up plus we had nearly got divorced...this is common...so stressful when DC is in a state...)

Once you hit puberty and secondary transfer, if you've got suspicions only, you've got real problems...not least because the child themselves will have opinions.

You would benefit from someone to talk to. Could you ask your GP if you could speak to a counsellor perhaps?

Asd (and) whatever level of learning disabilities.
My ds has ASD with complex and severe learning disabilities

The question is maybe "what level of learning disabilities" ? But you might not know at 3 .

Or more specifically you can ask can we assess his learning profile? Maybe he can read but not speak for example. May he is a visual learner and needs lots of visual instructions not just verbal noise.

If more needed i say he can read and communicates with an AAC app on his ipad ..