DS2's ASD and how his learning difficulties can be assessed

[MeAndMySpoon]

We're going through quite a hard time at the moment. DS2 is 3.9 and was diagnosed with ASD at 2.5. He's at a MS preschool and loves it there - he is generally a chilled, very happy little boy who loves his keyworkers and most of the activities they do there. He's recently started doing PECS there and is getting on with it well. He's pre-verbal (has used a few words but almost always to himself, naming things, not to us, though he's beginning to do a little bit of echolalia).

Our current heartache stems from trying to find him an appropriate school (due to start Sept '15). Because nobody has ever articulated how badly affected DS2 is by his autism, or how severe they think his learning difficulties are, we've had a lot of difficulty envisaging him in a school setting. We've visited MS primaries, special schools and an ASD resource base in a primary school, and still none the wiser, really. Nowhere has really jumped out at us as THE place for him.

Yesterday, I pressed his Eysenit for a bit more input into his potential abilities (we know there's no crystal ball) and she'd just talked to his keyworker at preschool, who'd been working on his profile that day. And I know this shouldn't come as a shock, but his cognitive levels and all the other ways they assess a child's progress at preschool - communication and language, personal social and emotional development - have only progressed very slowly since he was assessed a year and a half ago. He is basically in very much the same place as he was a year ago. His levels are around 18 months-2 years below his age. We knew this but I don't think it'd been expressed so baldly before. I think my head's been in the sand.

She (eysenit) couldn't really expand on this in terms of how he'll progress at school, but could we interpret this as implying 'Severe Learning Difficulties' rather than moderate? TBH, although we wanted more concrete information, I now feel very downcast and upset that he might be so severely affected. I'm feeling the stress of trying to find the right place for him, I'm bursting into tears all the time (I seem to be very hormonal at the moment too) and I feel like I can't see the wood for the trees.

We're still leaning slightly towards trying him in a local, small mainstream primary with a very good attitude towards SEN and ASD, the Head there is great and would follow his statement to the letter, aim to employ a TA with experience of ASD, etc. Would like to try that for a year and maybe it'll give us more of a handle on his abilities and where he needs to be.

Can anyone shed any light or experience on this for us, please? I'm in a fairly desperate state and can't stop crying about it all, which is a bit useless really. Any grips gratefully received.

Hi your ds sounds a lot like my dd2 was at your age , we looked at asd units and special schools , ultimately we've chosen
Special school and dd2 has made masses of progress , one thing I
Would urge caution with we were warned it's much easier to move a child from special school to mainstream than the
Other way round good luck

My DS was in a similar position when he started pre-school. He was non-verbal, in nappies and did not look anyone in the eye - in fact when he had his ASD assessment we were told that they could not rule out severe learning difficulties. His EYFS but him at 0-6 months for speech, 8-20 months for understanding at 3.6 years - he was at least 12-18 months behind in every category except gross motor skills. It was heart wrenching reading the document (although useful in getting a statement).

DS is now in a SS which only takes children with a diagnosis of ASD. He now has 20 words and is willing to try some more, he looks us in the eye and cuddles us, laughs at jokes and cries at scary things. He recently did his first wee in the toilet! He is still severely language delayed and has multiple problems but we did not think we would be at this stage. The NHS EP told me that with a very young non-verbal child it is almost impossible to assess their cognitive ability properly and as my DS would not engage at all then they really had no idea. The turning point for DS was learning PECS where he learned that if he was willing to communicate he would be rewarded.

I hope this bit of my story helps.

Jjxm great to hear about your boy , I was told the same about dd2 when
She was diagnosed at 2 it's too young to assess cognitive ability

My ds has just started in reception at special school. He does not have an asd diagnosis as of yet (awaiting ados) but currently diagnosed as social communication and learning difficulties and a seizure disorder.

The process you are in now I also found so extremely difficult so I understand how you are feeling. I also found I so wanted someone to give me a clear answer. The EP in my sons case found she was entirely unable to assess his levels as his level of concentration and attention is so poor he wouldn't engage in assessments.

I did take him for a private assessment that assessed him at a 24 month level (at 4.5) in all areas, except social development which was even more delayed and speech which was at 36 month level after very significant speech and language therapy input for 2 years.

The things I took into account when making my decision was how ds would cope in all situations within the school. Ds cannot manage any social interactions himself so needs a high level of support in every situation during the day.

That combined with his sensory issues, completely ruled out mainstream for me. I am delighted with his ss so far and he loves it. Even though he is the most verbal in his class he is actually one of the ones that has some of the most difficulty with social communication.

So what I'm saying is each child's needs are unique and only you know the combination of variables that will make a school work for them, and it probably wont be perfect match in every area.

Also agree with autumn it is usually easier to move from ss to mainstream than the other way.

Good luck and {{hugs}}

Thank you, all - this is really useful, and I do appreciate the support too. DH is also finding it helpful to read.

It's interesting what two of you said about it being easier to move from SS to MS than other vice versa - we were told it shouldn't be an issue, but I assume from an financial viewpoint the LA will be fairly happy to move a child from a more expensive to a less expensive placement. We are always assured by Eysenit that this isn't the case here though.

Am also worried that if we opt for a SS, the one/s we like more aren't our local one, and the LA may well decide not to fund transport. I know we can fight that, but...

What is the Senco like at the mainstream primary?
It sounds good from what you have put.
So you could try it & if the team there are supportive of you they could help with making the move if it was felt it would be better after a year of seeing how he got on at mainstream primary. I ask about the Senco as that would be a key person to support you.

We didn't see the SENCO on our first visit, just the Head. I'm going to ask for another visit and see if we can talk to SENCO too.