How do I get an official grade of ASD or special need?

[SadieChanges]

Ds got diagnosed with ASD just before Christmas , His preschool teacher says I should get a grade or level along with the diagnosis . She said this helps with funding, eg higher level more support in the setting. She believes he needs 1 2 1.

He is not 3 yet and she also said there is only funding when you are 3 but I want to make this happen. I have spoke to the doctor who gave the diagnosis he said there is no grade only descriptions of what he can / can't do which is in the report .

So who's right ? How do I get an official grade ? I'm moving area on two weeks so maybe they will be more helpful with this?!

Thanks :)

[Anna85]

When my son was diagnosed they said he was more high functioning but the spectrum is so wide they didn't actually say hence why they call it Autistic Spectrum Disorder.

With regards to help at school my son has a Statement of Special Educational Needs and I was never asked what level he was etc. When applying for help different professionals will be asked for a report including a Educational Psychologist.

It might be different in different areas but never known that to be asked to obtain help x

[SadieChanges]

Thanks for your reply Anna. It's hard to know who is right on these things , as the doctor and preschool seem to think completely different things. Ds is non verbal and basically just runs about a lot repetitively , or moving things about. Frequent tantrums , cries for no apparant reason. I would assume its not at the milder end.

I don't know who to believe on this , I asked the doctor for a more detailed analysis of the ADOS but they said I wouldn't understand the report and there would be no point.

[Ineedmorepatience]

Tbh, sadie, I think that it is the jib of the preschool to tell you how much support he needs.

How do they expect the proffs or you to know how much support he needs to enable him to access the preschool curriculum.

I think you need to speak to the SENCO at the preschool and ask them what support they are going to give him.
If they are not very helpful you may need to look for another preschool.

Good luck

[Ineedmorepatience]

The job of course

[SadieChanges]

Ineedmorepatience I'm moving soon so he will need a new preschool anyway . The preschool have been helpful and have unofficialy given him 1 2 1 with a parent who is doing her qualifications and volunteers at the preschool and they are very accomadating. They were applying for funding and know he needs lots of support , perhaps the preschool teacher is wrong?! It's all so confusing, who is the definitive person to ask , or isn't there one?!

[Ineedmorepatience]

The SENCO at the preschool should know and if she doesnt she should be able to contact an early years sen advisor at the local authority.

They should aleady be speaking to the advisor anyway as far as I am concerned if they have a child with ASD in the setting.

Good luck

[SadieChanges]

Thanks , it makes sense to me , as you say surely that's what a SENCO should do. The preschool SENCO and area SENCO have observed him but I have never had any information back , are they supposed to discuss with me ?

[Ineedmorepatience]

Yes, they should be feeding back to you. When our eysen advisor comes in we nearly always invite parents to come early at the end of the session so that we can feed back what we have observed.

When we set IEP's our advisor often comes to support us especially when the child has a diagnosis such as ASD and parents are always at those meetings too.

Preschool are surposed to involve parents, every step of the way, it is in all the EYFS paperwork.
Remember you know your ds better than anyone and they should be talking to you.

When you move him look for a preschool which is involving parents.

Good luck

[SadieChanges]

I think they do try to update me but I have a baby as well, she is left in a corridor in pram often crying as I have gone to get ds / bag/coat. So dropping off/ collecting are a bit rushed with my ds getting upset so I'm always on edge. I also collect him early every day as they say a whole session is too much for him so they can't really talk as they are still looking after the kids.

Anyway I have emailed the preschool to ask for the SENCOs recommendations after observing him . Sometimes I feel I'm no good at any of this and haven't a clue what I'm doing!
MIL says I have to fight for stuff but I don't even understand what I'm meant to " fighting " for half the time .

[Ineedmorepatience]

You should come on here and ask if you dont understand something. There is always someone around.

This is the best place ever for combined knowledge. Dont knock yourself you are only just starting out.

You will soon be an expert

[StarlightMcKenzie]

'I asked the doctor for a more detailed analysis of the ADOS but they said I wouldn't understand the report and there would be no point'

Bloody Hell [Angry]

[WilsonFrickett]

The first thing you have to get your head round is that medical and education are two completely separate things. A doctor diagnoses, but can't make recommendations as to how a child should be supported in school - how can they? They don't spend any time in schools.

So now you have your dx you have to start again with everything you thought you knew about education. Ineed is spot on about what should be happening. And it shouldn't be just 'end of day' updates either, you should be invited to more formal updates to do things like plan IEPs - these should be private meetings, not just the normal 'how was DC' handover that we all do at nursery level.

Pre-schools are part of the Early Years framework and have statutory responsibilities. They shouldn't need you to lead them through the process (although some do )

If you're moving areas anyway, you have a good opportunity to sort out a better place for your DS. Start by seeing places yourself, or talk to managers on the phone rather than trailing him round everywhere and ask lots of questions about the support they offer. Are you moving LA or within the same one?

The 'grade' thing is a red herring, have never heard of it, although wouldn't be surprised if there was a 'shorthand' for different levels of ability within education settings.

[StarlightMcKenzie]

Btw, if you still want that report that you 'wouldn't understand', still ask for it. You are entitled to it. Anything you don't understand can be understood with determination imo.

If his preschool teacher says she believes he needs 1:1, then your child will probably need a statement. You may as well get on and apply for a statutory assessment (depending on when you are moving areas). The best thing you could do atm is get the preschool teacher to put this in writing. She may be more willing to once she is certain you are moving though.

[SadieChanges]

I get the impression they diagnose your child with ASD and then you are supposed to never be heard of again . The next contact I was supposed to have with the paediatrician was 9-12 months after his diagnosis. Oh I got given two leaflets one titled " What is Autism" as if I hadn't even found that out before ADOS assessment and one about a local special needs group I had already found myself!

Ok thanks Starlight I will get the preschool teacher to put in writing he needs 1 2 1. I will ring the clinic and say I want a copy of the assesment .

[StarlightMcKenzie]

Okay. Now familiarise yourself with the IPSEA site and find the model letter for applying for a statutory assessment. You should send it as soon as you have moved, or before if it is the same LA. The sooner the better, especially if you have the preschool teachers note.

[SadieChanges]

Don't I need to find a new preschool before I can do the statutory assessment ? I am moving 200 miles away so completely new area , will have to start all over again :( !

[StarlightMcKenzie]

You don't need a preschool. Your child doesn't have be in any educational setting. Formal school isn't even necessary until 5 and you can have a statement from the age of 2.

A statement can get you home tutors if that is what your child is assessed to need at this stage. Children on some autism specific education programmes have 40 hours home tuition at home costing around £50k a year. Unsurprisingly this information is rarely offered by local authorities, nor the provision, but it is within the realms of possibility.

But forgetting that for a second. If you apply for a statement now, then hopefully your child will have all provision in place by the time they start nursery and in particular, school/reception.

[SadieChanges]

Thanks so much starlight , the preschool teacher emailed back and is happy to put in writing that ds needs 1 2 1. I will apply for a statutory assessment when I move. I have also found there is a special school only 1 mile from my new house so I'm really interested to visit that. I don't see how a TA with no real knowledge of ASD can help my ds.

I would think I could do more at home with him, we are currently going through More Than Words when his baby sister allows. Im not sure if a special school would help him more but maybe if he gets this assessment it will all become clearer.

[WilsonFrickett]

First job when you move is to speak to the National Autistic Society and see if there's a local support group in your area. Other parents will know what's available, from where, and what you need to do to get a hold of it.

Write everything down even if it sounds random. In my old area for example the SALTs seem to know everyone and everything that was going on (although the therapy didn't do DS much good, the info really helped!) in my new area there's an actual parents support worker. With funding and everything!

[SadieChanges]

Thanks Wilson , I have already contacted the NAS in my new area and spoke to the lady who runs it there. She has sent me out the newsletter and details of meetings etc.

The only issue is its 10 miles from my new house and I don't drive so will have to use the bus , but I hope to learn to drive this year so hopefully it won't matter eventually.

[lougle]

I think you've been a bit bamboozled by the sounds of it.

Firstly, if you are moving soon, you could phone the SEN officer of the new local authority and say 'I'm moving to your local authority in and I have a non-verbal toddler with an ASD diagnosis. He currently can't access a preschool setting without full 1:1 adult support. I'll be applying for statutory assessment but in the meantime I'd like details of SEN preschool/nursery and how to secure a place.'

[SadieChanges]

I think I am bamboozled lougle, I deal with most of this stuff , dh doesn't really get involved and I have no family/ close friends here , so I have no one to discuss with really.

I found that there is a special school only 1 mile from my new house , run by the local authority. It accepts children from 2, and sounds ideal .
I read Lougles post after I had emailed the school asking for more information and what criteria my son had to meet to get a place there. I hope that is an ok thing to do as I didn't know to call a SEN officer.

[lougle]

Don't worry, the school will just say 'the LA allocates places, contact them.'

[SadieChanges]

Ok I have emailed a SEN person from my new area and I'm going to the docs tomorrow anyway so will try to get a copy of ADOS report from them. Thanks so much for all the help. I really appreciate all the guidance here . It feels like everything is a big secret when your kid has special needs , nobody seems to tell you anything or volunteer any information . Or maybe that's just my experience ?!