Struggling to accept DS 3.5 is likely autistic

There are suddenly a lot of articles in the press about how autism and adhd are over diagnosed and all these kids are just naughty. Not at all suspicious timing with the government wanting everyone to get behind the sen reforms.

But yes, plenty of children with speech delay are not autistic. One of the kids in my family didn't speak more than 2 words at a time before 4 and is now a perfectly eloquent older child who is not autistic. Just needed a bit more time.

That's interesting. Can I ask what he had and how he is now?

Don't worry about his siblings. I have an autistic sibling. It's taught me and my other sibling a lot about kindness, understanding and valuing differences. You don't know any different from your own family, it would never cross their minds to worry about it.

My DS is 5 with ASD and learning difficulties and at 3.5 he couldn’t really follow many instructions at all and had extremely limited speech. He is a gestalt language processor as well, his speech is pretty decent now, can we have a full conversation? Not yet but I can ask him a question and he will reply, he tries to make conversation now and will go back and forth a little with his younger brother, he can tell me if he needs something/ somethings wrong. Communication is much easier and always developing, he still repeats a lot and has lots of gestalts he still uses but on the whole his speech is much much more typical and I think it will only improve as he gets older.

Whilst he has lots challenges learning new skills, now that his speech is better we are starting to realise that he is actually extremely clever which has been a lovely surprise, he is fantastic at reading, writing and maths (he did 8x9 on his little kids computer the other day and we were gobsmacked). He is only attending mainstream school for 2hrs per day as he just can’t cope in the environment so we’re going through the process of getting a EHCP and hopefully a specialist school place. Considering he spends almost zero time in the classroom, yet he is able to do what he can do is just phenomenal.

There are lots of different kinds of specialist provisions and for me personally I would rather my son thrive in a specialist environment which is better suited to him that also incorporates therapies and learning life skills than watch him struggle through mainstream. There are specialist schools close to me that offer a great education and a really flexible way of learning depending on needs.

What I’m trying to say it’s very hard to visualise the future with a child with SEND but in my experience they are always developing and always learning in their own ways, it’s natural to worry but a lot of it is out of your control. What you can control is ensuring that your son gets early intervention and as much support as possible because it can be a real battle to get your child what they need when it comes to their education and your child will need you to be fighting their corner. If you’d have told me where my son would be now, when he was 3.5 I wouldn’t have believed you.

We unfortunately still haven’t cracked the toilet training but we keep trying and he will get there in his own time. I’ve come to accept that it won’t be like potty training his little brother (all done and dusted before the age of 3) but that it will just happen when he’s ready and I’ve let go of some of that guilt because I know we’re doing our best. School have been fantastic and supportive with this, they are happy to do changes and they also follow the toilet training we do at home as well so encouraging him to sit on the toilet regularly etc. School have seen his challenges and they know that this is something that is going to take a lot of perseverance and familiarity.

We still have lots of challenges around him being dysregulated but I’m hoping these things get abit easier as he gets older.

Do I wish life was a little bit easier for him and he didn’t have these challenges? Absolutely I do but he is so loving and kind and sensitive and he has a wicked sense of humour. His little brother is so caring, boisterous, cheeky and outgoing and they just make the most wonderful pair. We are very blessed indeed.

I was afraid of sen school and then fought for 2 years to get my boy in at age 7 to a ld school. I wish I'd started earlier for a reception start. Mainstream for an autistic delayed child is difficult. He was always happy to go to school and the children liked him well enough but it was a waste of time. They learn specific social skills at sen school which mainstream children don't need to be taught. At sen school he has friends and I don't worry all day about him getting hurt putting something in his mouth etc.

Mine is definitely autistic with a small number of words. He has just been diagnosed at 4.5. There is no way it is something else.

My little boy sounds like yours we have just about managed mainstream this last year has been hard
he starts a special secondary school in September I’m terrified of the future and I still struggle to accept x

Start applying for sen school and then if he doesn't need it don't accept the space. I honestly wish I had done this it will save you so much stress and worry

Are you using a “GLP approach” with him? Child led play, reducing questions, acknowledging gestalts, modelling functional phrases, using visuals. It’s not a magic fix but a lot of kids respond well to it.

No. You apply for the ehcp and at the same time apply for mainstream with everyone else. Because it takes so long you'll probably get your mainstream allocation and then go to panel or appeal for sen school. But start applying for the ehcp now-- it may be that he just needs extra support in mainstream but the ehcp is very important.

If he hasn't got an EHCP or a diagnosis then how can she do that? Plus from the sounds of how he is they will probably expect him to try mainstream first. My son is probably slightly more severe and he is starting mainstream.

Just been refused an assessment for an EHCP even though my four year old is still in nappies, speaks very little, has a diagnosis of autism and has very little sense of danger. Oh and they have done it in the middle of the summer holidays so you can't contact the SENCO. Lovely. OP should be prepared that they will refuse.

Please try and contact your SENCO. I check my emails throughout the holidays when there are things relating to EHCPs happening. It's not a requirement but the pay for the SENCO role is buttons, most are doing it because they have an interest at least. It's worth a try. Sorry the EHCP was rejected - it's a horrible system for parents.

Thank you for that. I will send a short email to her informing her of the decision. She was happy to know about the outcome of the autism assessment.

i have 4 kids. The older two were only diagnosed as ND much older (14 and 19) having developed typically in many ways and had a fairly uneventful primary school journey of masking and assimilating to a certain extent.

What I would say is - you never know when the wheels may come off. Our journey has been different to those with more “traditional” autism but very difficult nonetheless with huge mental health worries, police involvement, risk taking, social problems etc. I say this because you may feel very bleak now but you never know what is around the corner - even if you feel like your children are developing typically. Mine are now quite heavily supported and wonderful human beings but life will never be easy for them.

You can appeal their refusal. We did with DD1 (17) and she now has an EHCP and is in a specialist college.

Wish you all the best.

You start applying for the ehcp and make it clear you want sen school - the ehcp is on needs not diagnosis. My son is very severe had his diagnosis of asd and gdd and we got our ehcp (not worth the paper it was written on) when he started reception. mainstream named because the county put me under pressure to name it. If I had known then what I do now, I would have refused to name it and started the panel progress. When I got the ehcp I started the appeal but took another year and half to get a sen school.
There are kids at my sons sen school who got places in reception because their parents knew to refuse to name mainstream.
We were told try mainstream but it was a huge waste of time. And for more severe children very unsafe environment.

Put your appeal in now the waiting lists are at 18 months for tribunal. Then you also start pressuring your county. Lots of group on Facebook with parents in exactly the same position. I wish you luck. You may get it overturned at mediation because I've heard that happening quite a bit.

Going to start with mediation first. Just annoying or maybe it is deliberate that they choose to reject in the middle of the holidays when you would have liked a chat with school.

I hate and dread any communication over the holidays. I really hope it gets overturned at mediation.

We found mediation completely useless, sadly. The LA just doubled down on their refusal.

On that basis, my advice would be to go straight to appeal. They backed down before it went to court and agreed to do the assessment.