Special Educational Needs Register

[Charlieandthechocolatecake]

My gorgeous 7 year old who has the most perfect manners and is a steam train expert has just been put on the SEN register.

He has had problems at his school since he started in January last year year due to bullying.

Now he is on the SEND register. I don't know what my AIBU is. Sorry.

I don't even know why I mentioned bloody steam trains. The school have advised me that I need to pay for an autism test. Does the NHS not cover that? We can afford it but why doesn't the NHS cover that?

I love him, he's so lovely. I'm so sad.

You DO NOT have to pay for an ASD assessment. Your GP can refer you to CAMHS (child and adolescent mental health services) who do the assessments. Under NHS guidelines they should see your son within 18 weeks of him being referred but you do have to nag and be in their case.

The 18 weeks target is for a generic CAMHS assessment though, not a neurodevelopmental assessment. All a generic assessment is likely to illicit is a "yes, he has ASD traits we'll put him on the waiting list to be assessed by the Neuro team". The waiting list for neurodevelopmental assessment in my area has now reached 2.5 years.

I would imagine that the school suggested paying for an autism assessment because they know the waiting list for a CAMHS assessment can be very long and perhaps you would benefit from diagnosis sooner.

But you don't need a diagnosis to put support in place. You don't need a diagnosis for an EHCP - so get the assessment underway. Look at diagnosis as a long-term goal; and in the meantime, start reading up about the autistic spectrum and how wide-ranging it can be. Post in supportive places - the SN boards on Mumsnet are good, if you are on FB then I suggest the private group "Autism Parents Chat".

I know autistic children are very focused on one thing in particular

Not necessarily btw. This is just one of many myths. Every autistic child, every autistic person, is different.

@Letseatgrandma I don't want to be too specific, were in West Kent.

@IceCreamAndCandyfloss I was shocked at this to be honest when they said they'd be testing the kids on their 10 x tables. He got full marks. A lot of other kids didn't finish on time. The school is rated good. I don't know whether I'm coming or going.

@youarenotkiddingme thank you! I've worked with young adults with special needs. I didn't know my boy had them until now. I feel so ignorant. I know I said we can pay but that was without asking how much it costs...has anybody paid for the assessment privately?

My DS doesn't necessarily like our home routine of homework before fun (what kid does!?) But he gets on with it without a problem.

I don't want to say that I don't believe he has special needs but at home he certainly doesn't.

I would hold off with all the extra homework at home, especially as he's not keen with that as a home routine. Id try and make home routine as ammenable to him as possible.

Work with he school with any suggestions as to what will help with him at school.

@EggysMom my apologies, I have children in my family that are very focused on one thing. I've also worked with young adults that are the same. I worked with clients with Autism for years and I never knew any different. I feel stupid. Not because of you! I just feel like a whole new world has opened to us. DS always wants to sleep on top of his duvet with his glasses on. He tells me he loves me a hundred times a day but is reluctant to hug me. He wakes up at 5am and practices his timetables on his calculator. Were these signs? I think so. I'm a shit mum. I love him so much.

@MinisterforCheekyFuckery Fuck that, that's ridiculous! So a child needs to wait almost 3 years until they can get the relevant support!? What about those that can't afford to go privately? I'm so angry.

@FlyingBanana when I say he's not keen, I mean he'd rather play with his Hornby train sets or watch train simulations on YouTube. He's just like any 7yo that doesn't want to do homework! For what it's worth, I think our home routine benefits him. I think it prepares him well for what he is due to learn in the classroom. His teacher agrees with me.

It might be worth a try though. I only found out my daughter was autistic at 9 (v v v bright and, as a girl, v rule driven as had slid under the radar at school as not so obvious.) I was similarly shocked Id not noticed it but then lots of things made sense in retrospect. Our appointment was just under a year from talking to school, so less than a year by the time they referred.

In our case (and Im v aware all children are different) my child really really really needed to unwind from school in her own way. If school is a struggle, and hes only little, adding more structured school work is adding demands to a child that isnt coping with demands. We were advised physical activity and free play as its helped her learn to self regulate. In particular shes noticed she wants to hang (we have a chin up bar now ) and spin (we have a thing she can spin on). She is finding school a LOT easier since we reduced out of school activities and have let her have more down time.

Have you seen the "coke can" story? Playing with train sets and watching train simulations might well be just what he needs when he comes in from school. And is age appropìate. My daughters current interest is rollercoasters. Shes older than yours but she could feel herself beginning to "go" a couple of weeks ago and just came to me with the ipad (we have all tech locked but let them use it), rocking and saying "rollercoasters" . She's not normally like that but she was struggling regulating herself and a few rollercoaster videos later and she was fine. Its amazing when they learn ways to self regulate.

The school need to do a referral and it takes about 14-18 weeks from there. In the mean time you will receive a questionnaire to fill in and so will the school (or you will to pass on to the school) the paediatrician cannot proceed until both questionnaires have been filled in and sent back. Then they will make arrangements to come in and assess your child.

(This is currently happening with us)

Private Ed psych is around £700-£800 for a complete assessment. Not sure about other routes.

Find out what the assessment pathway looks like in your authority. In mine the route is through the GP to the community paediatrician, the school will be asked to provide supporting information but cannot make a referral themselves.As to a paediatrician coming into school-never seen one here! However, different authorities will have different pathways, it's no good calling the SENDCO a "lazy sod" if it's not within their remit!

Ours was school referal to paed. I know other areas go via cahms we dont. Ours has taken maybe 9 months to come through after the questionaiire. We go to paed, paed doesn't come to us

The school need to do a referral and it takes about 14-18 weeks from there. In the mean time you will receive a questionnaire to fill in and so will the school (or you will to pass on to the school) the paediatrician cannot proceed until both questionnaires have been filled in and sent back. Then they will make arrangements to come in and assess your child.

OP please don’t take what posters like the one above say as gospel.

That may be what happens in their area, but it isn’t what happens in mine.

You need to find out the process in your LEA.

@FlyingBanana do you mean the paed did the assessment 9 months after they received the questionnaire? This worries me as I'm really hoping for an assessment ASAP to put my worries at ease.

Yep and that's quicker than some areas Ive heard... but all areas are different. It's not quick. Our school put measures in regarsles of diagnosis though.

Sorry if I'm derailing this thread. School haven't said what they think my DC has just that whatever is it, is mild.

They have just gone into year one and got most of the EYFS goals bar managing feelings and listening.

I rang the paed last week who gave me a date in mind once they've heard back from the class teacher (I'm chasing every day) but does this mean they will do a simple assessment and then refer her to a neuro team (if they deem necessary) or give a diagnoses there and then?
Sorry for the waffle, I just would rather go the private route if it's going to take months and months.

I'm constantly second guessing myself and wondering about signs of ASD or ADHD or nothing at all. It's so hard!

In my authority, the GP refers to the Community paediatrician service who conduct an initial triage screening. If accepted, the referral moves on to the developmental assessment screening where a tentative diagnosis may be made. if ASD is thought to be a possibility, the referral move on to an ASD screening. the process can take 12-18 months, sometimes longer!

Cheese and biscuits. Id personally stop the daily chasing and accept it might take a few months. You child wont change as a result of diagnosis, the things people need to put in place wont change and they seem reluctant to diagnose the younger they are. My child is 10 and has been exceeding nearly all goals all the way through, but its unravelled for her as she's got older, which has made sense of challenges she had when younger.

I don't know what your area does in terms of assesment. But although its hard I'd really step back and use the time to observe your chold and tey out some strategies. I panicked early on but the time has meant I've learnt so much more about ASD and about my child and how she presents, and what strategies have worked so far. Its not like there's a quick blood test.

I can just state something that should be blooming obvious.

A school that knows a child is being regularly pushed over and covered in mud is not a school your child should be at. Ever.

Whether your son is difficult or not, a school that does nothing when persistent physical bullying is known and accepted, will never support your child adequately. They cant even manage their neurotypical kids.

Whatever else you do (private or state ADOS) get your son out of there quick. You are teaching him to be a victim and that its ok for other children to hurt you.

For all those saying the school need to refer.

This is different depending upon where you are living.

In Essex (most areas) school refer to the child development clinic.
In other areas it has to come from a GP.

If you can afford a private assessment OP I’d go with that and avoid the lengthy waiting lists.

Has he got an EHCP op? I’d make sure one of these is in place long before the transition to secondary school.

I would suggest you look up the NAS (National Autistic Society) and try to make use of their helplines, also see if there are local groups in your area. Often information provided at a local group coffee morning can be among the most useful - as those parents have had to deal with your local area and know the local ins and outs.

Don't panic!

I would be moving on two fronts - via the GP for an Autism diagnosis, and via the LA for a EHCP. You can get the latter before the first is completed (whatever school might say).
It can also be useful for you to keep a notebook to record things your DS finds hard, odd ways he has of speaking, things he doesn't get, issues at school or elsewhere and "why". These kinds of notes can help you remember when going through the assessment process.
It can also be helpful to keep a diary of interactions with school, recording issues they raise, things they promise to do, provisions they put in place.

But getting appropriate help sooner will help your son. I wouldn't be worried about academics, he is doing fine.
(And Autism and Autistic traits do tend to run in families.)

In Essex (most areas) school refer to the child development clinic.

We are in Essex and the schools here cannot refer to the Child development centre-that has to be done by the GP.

Shows how much things vary even within one authority.