Where to start? Newly diagnosed

Hi - I totally understand you feeling lost. I can't offer professional advice only share my experiences which have been similar and may be some use. My son has just turned 5 and was also 3 when the GP first mentioned ASD although we had suspected it for some time. It has taken us 2 years get him reviewed for a diagnosis which we is now imminent. I didn't think the 'label' mattered before so didn't push for it but in hindsight we have struggled to get the right level of support in his first few years at school and access to support/advice ourselves so I think it's useful and possibly in your favour if you already have a diagnosis.

So about school - firstly, the biggest thing I have struggled with is that no-one seems to discuss anything with you unless you specifically ask. It's as if you are supposed to automatically know what to do and where to go for help.  If he is at Pre-school his Keyworker may be able to advise you as to whether they feel mainstream school would work for him and give input as to how he is within the Pre-school setting which is often very different to at home where they feel safe.  I suppose it depends on what your Son's most prominent symptoms and needs are too whether mainstream or specialist schools are best. My son was also non verbal and under SALT and as the time approached to apply for schools I really didn't think he would cope in mainstream school.  I looked at so many alternatives but nothing felt right and without a diagnosis no-one supported our case for a specialist school so I nervously took the plunge and sent him to our local mainstream school. He has actually surprised us all and done remarkably well academically but does struggle emotionally which I suppose would be the case wherever he goes.  There are some mainstream schools with specialised SEN units so I guess it may be worth just calling around or your local Council/Citizens Advice centre might be able to give you some names.

Even mainstream schools are all very different so I would look at as many as you can not just the nearest. Ours were really supportive in Year R but he had a great teacher who really took the time to understand his needs. In Year 1 that hasn't been the case, I am told that he is 'fine' at school but as soon as he comes home his anxieties seem to come flooding out as if he has been suppressing them all day. There are other children at the school who are 'diagnosed' ASD and ADHD and they do received fantastic 1-to-1 support so the support is there you just need to shout very loudly for it.  My suggestion would be to attend as many open days as you can at local mainstream schools and ask what SEN support they have in place and what support your son would receive if he went there. You can usually get a good (or bad) vibe from them as to how supportive they might be even from a first meeting at open days.

As soon as my sons place was accepted at school I had several meetings with his teacher and the school SEN coordinator (which his pre-school also attended) and agreed exactly what should be put in place to make his transition to school as seemless as possible. I have come to realise that you have to be one of those parents (and it doesn't come naturally to me) who is constantly banging on the door requesting progress updates and review meetings to get anywhere.  I appreciate that with so many funding cuts there is such a strain on extra support and SEN support in mainstream schools and you do seem to need to keep on and on to get the right level of support.

I'm still not certain whether mainstream school is the best for our son but while he is so young it's OK and he seems happy being in a familiar environment as it's a local school so he knows other children from our area and is probably more at home there than he would be anywhere else. It's always on my mind that at some point in the future we may have to re-consider that but for now I think we made the right decision.

I don't know if this helps at all but at least it's nice to know sometimes that you are not alone.

Good luck!