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?

@Gtsr443

I agree to a point but overall the language about autism is useless and it is detrimental to getting effective provision.

I think the problem with effective provision runs a lot deeper than using functioning labels.

We need terminology to clearly explain need and ability because there is obviously a vast difference between a non verbal autistic person with significant comorbidities and a fully independent, employed and autonomous ND person.

Right, but anyone involved in delivering care or accommodations to those people will have detailed information. They wouldn't go off a low/high label because even within those areas people are all different and their needs are not the same

I know my ridiculously clever son will never live independently or hold down a job or marry and have kids. He can make progress in certain areas of his life as he matures but he's never going to suddenly transform into someone else.

I would have told you that about mine when he was younger. I toileted him until he was almost ten years old and had no idea he could ever live a relatively independent life but he is on the right path. A low functioning label would have absolutely hindered him because everyone involved in his care would have seen that first and him second. They would have made their decision about what he needed and his abilities without considering him as a person.

OP, my limited experience is that a well written EHCP is very helpful as it means you avoid the arguments about what language to use. It will set out that your child has autism and then what it means for them as an individual. What can they cope with & what can't they cope with. Being able to start primary school armed with that means you should be able to avoid some of the more pointless battles with either your child or the school that you might have otherwise had.

It's becoming more and more usual for academically able children hampered by significant levels of autistic challenge to get EHCPs, is that's what you're asking. Bloody good thing, too. For a long time, only what was then called "Kanner" autism was properly supported.

DD & DN both went to good universities to study challenging subjects, and their EHCPs from school were used in assessing them for DSAs.

A child can be able in some domains and challenged in others. Don't think of an EHCP assessment as a bad thing or assume his future is gloomy.

An EHCP just means that your child will be able to access the adjustments they need in order to access their education. My child has one which states he needs 1:1 support for the entire school day. Without this, he wouldn’t be able to attend mainstream school. It doesn’t really mean your child is anything (e.g. severely autistic) as it’s not a diagnosis, it just provides the criteria for what your child needs to be successful in accessing their education.

Hi OP, assuming we are talking about an EHCP and not something else, think in some ways you are lucky (I know it won't feel that way!) The fact the setting is being so proactive means your son is displaying obvious behaviours in it. My daughter was already becoming a pro masker at that age (apparently no issues at school; masses at home) and as a result, we are now going through the EHCP process in year 5 (and it can take ages - we already 8 months in and it would easily take another 3; plus maybe an extra year if we have to go to tribunal again).

For your info, the key times there tend to be an issue are the transition from nursery to school and the transition from primary to secondary. Being able to put things in place ahead of those transitions is very helpful.

See if you can find other parents going through similar (look at your local authority's "local offer" web page for groups).

@highlandspooce low functioning label would have absolutely hindered him because everyone involved in his care would have seen that first and him second. They would have made their decision about what he needed and his abilities without considering him as a person.

I really don't know anyone involved in my son's care and in his life generally who only sees him as a labelled disabled person.
He is treated by everyone with respect and courtesy and given every possible opportunity as an individual. However we are all realistic about the extent of his needs and abilities and the amount of support he requires.
And his needs are conspicuously apparent within a minute of meeting him.

I still believe that the "autism spectrum" thing is incredibly unhelpful - particularly in wider society where people have gone from thinking all autistics are Rain Man to thinking all autistics are Chris Packham.
I met a woman the other day who, when I told her my son was autistic, rolled her eyes and said "Oh God not another one - it's everywhere these days."
This is what we're up against.

My son has had an ehcp since he was in year 1, I have fought a lot over the years to get the right provision written into it (he currently has full 1-1 clearly written) and because of it he is in year 8 at a mainstream secondary and thriving because we have been able to get the right provisions for him.

don’t get me wrong we still face massive challenges and things aren’t straight forward but because we had the support from an early age it has meant he has been able to access things as well as possible for him

@Gtsr443

I really don't know anyone involved in my son's care and in his life generally who only sees him as a labelled disabled person.
He is treated by everyone with respect and courtesy and given every possible opportunity as an individual. However we are all realistic about the extent of his needs and abilities and the amount of support he requires.
And his needs are conspicuously apparent within a minute of meeting him.

Right, so the high/low functioning label isn't needed to help him access support.

I still believe that the "autism spectrum" thing is incredibly unhelpful - particularly in wider society where people have gone from thinking all autistics are Rain Man to thinking all autistics are Chris Packham.

That's not what the spectrum means though. It's only unhelpful because people think it means 'where do you sit between rainman and Chris Packham?'

I met a woman the other day who, when I told her my son was autistic, rolled her eyes and said "Oh God not another one - it's everywhere these days."
This is what we're up against.

She is just an idiot, she doesn't need to know your sons suppers needs or whether he would be classed as high/low functioning and if that's the reason people think we need those labels they are far off the mark.

We’re at a similar point to you in that our DD’s preschool is supporting us in applying for a EHCP. To be honest it’s been really helpful as it means we’ve already accessed support from the LA’s SEND team, and has arranged extra transition sessions for us for reception etc. it means our daughter will get the extra support that it’s clear she’d struggle at school without. On the flip side I know of people with children who it’s clear they’d benefit from the EHCP but aren’t getting the support from their school/setting. Take all the support you can get, it can only be a good thing.

Are you always this rude?

I agree with this. My son is probably autistic and probably at the lower functioning end. Getting assessed soon hopefully. I'd rather be able to say he is lower functioning so people understand his needs as a lot of people still assume autism is just a bit of social anxiety and intense interests!

Watch thread with interest as I'm waiting for EHCNA currently.

@highlandspooce I've been up all night with my son. I'm very tired and stressed having had a bitch of a week dealing with my son's medical issues and I need you like a fucking hole in the head dissecting every opinion this morning. I don't agree with you. I think you are talking ablist shite actually. But anyway have a nice day.

@PollyPeep

Are you always this rude?

When people 'identify as' a disability?, yeah, probably.

I actually didn't mean to be rude there but you can't identify as Asperger's. You either have the diagnosis, and n which case you can use it, or you don't, In which case you don't.

Apologies; I thought we were just having a balanced discussion there. I didn't mean to antagonise you but I am absolutely not being ableist at all. It's a horrible word to throw at someone who has indicated they have at least 3 autistic children. I'm autistic myself so perhaps my communication isn't the best but I absolutely didn't intend to appear ableist. I want the best for everyone here.

I'm sorry again

Her sister hasn't "identified" as Aspergers. The PP clearly said her sister was diagnosed with Autism, the diagnosis given was "Aspergers" and although "Aspergers" is not a term used as widely anymore, her sister feels "aspergers" best fits the way her autism presents. Essentially a type of "higher functioning autism".

So much aggression when I think at the end of the day, we are all on the same page....advocating for support for the autistic community? But I may be wrong.

And for the OP, I echo PP.

Absolutely brilliant that the pre school are doing this. Engage fully and advocate for your boy. Get him ALL the support he needs.

We are having our Ed Psych visit next week for our child who is going through the EHCNA (NA-needs assessment) and he is in y4. A bright child but unable to read or write above reception level and whilst "high-functioning", when his anxiety hits....the levels of fear and violence are debilitating for them and the whole family. He has a range of SpLD (diagnosed).

Good luck x

But this is where it gets complicated. My son would probably be classed as high functioning because he is fairly academically able. But that doesn’t show the exceptional level of support he needs. He is 13 and has full 1-1 in school. He can’t be left alone at all, the idea of being able to nip to the shop and leave him home is years off if ever. He doesn’t sleep properly. He doesn’t eat. He only became fully independent with toileting last year (and still not 100% reliably)

but because he can attend mainstream school people see him as high functioning so the expectations of what he can do are unrealistic if people just see a function label. I am at the point of starting to really worry about adulthood and what that will look like for him.

really functional labels in my view are about how things look to outsiders rather than the actual day to day life lived.

I do think this could be a supportive thread if there is less bickering over semantics. It is clear some people find the 'high/low functioning' label helpful, whereas others don't like it. It's down to them and nobody else what they choose to use. I personally would rather use a simple label than gave to give a lengthy description of my son's needs. I have found it helpful, otherwise people tend to minimise his needs, which doesn't help accessing support. Each to their own I say. Both sides of the argument are right.

Could we get back to the point of the OP'S thread? The OP is clearly a Mum who is anxious and worried about the future and all this disagreement isnt going to help. Can you take your 'debate' somewhere else because all you are doing is derailing the thread and it isnt helpful, infact it seems cruel.

OP - My son has had an EHCP since he was 6 (although it was a statement for the first couple of years, which is what children had under the old system). The process can be frustrating, and at times it can be drawn out, but a good EHCP can ensure your child gets the support they need. In our case, it also means he has a place at a special school, which he wouldnt get without one. Mainsteam beyond reception was a disaster for him.

As a PP said, SOS SEN or IPSEA are a great support. There are also some great FB groups if you are on FB.

Please try not to worry, it is a good thing the professionals involved in your sons care are doing this. A large number of people have to fight to get professionals to listen.

I am in the process of applying for an EHCP for my older autistic child who isn’t able to cope. This is sadly common.

It is really good news if you school/nursery are ensuring your child has support from the start. From my anecdotal evidence few autistic children manage the transition to secondary school without needing additional help (sometimes moving schools or even leaving school altogether). The children who have had an EHCP in primary seem to fair better.

I know plenty of teens with EHCPs who are doing well academically. It’s a bit of a common misconception that it’s all about intelligence or academic potential. It’s about getting the right support around children and YP so they can access education.

That's a fair point Sirzy. They should really be basing his level of functioning on his ability to be independent though IMO, not where he is academically. I this is a symptom of the lack of support and underfunded services more than anything.

@highlandspooce No probs. Forget about it. We're all in it together. I've just had a week of dealing with doctors and psychiatrists and PIP and EHCP and I'm so fucking worn out with having to defend and explain myself. I shouldn't have posted really. Apologies too for ablist thing - the 'can't wipe his bum now he's at uni' thing hit a raw nerve. Have a good day.

But some people simply are high functioning...

It isn't offensive at all.

One word of warning is be prepared for it to be a fight. A lot of areas seem to refuse to applications for needs assessments as standard even when the criteria are clearly met. Be prepared to appeal. Read up and make yourself knowledgable about the law because some local authorities have odd definitions.

sadly a lot of children end up left behind because parents aren’t able to do the fighting needed. That isn’t anything against the parents but it’s a system which sets young people up to fail

take any help you can now to get things in place.

the 'can't wipe his bum now he's at uni' thing hit a raw nerve.

I really didn't say this. I said i toileted him until he was almost 10 and his needs changed dramatically over the next few years. I still have to give a lot of support but I can see a future for him I didn't envisage back then.

Sorry to raise it but I relent don't want to be misquoted.