Struggling to accept DS 3.5 is likely autistic

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.

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.

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

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

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.

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.

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.

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.

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

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.

There was an article in the press today about how a lot of other conditions are now being diagnosed as autism and just how different the challenges can be for people at different ends of the spectrum. My son had zero words at three but he didn't have autism, no-one ever talks about the many different reasons for speech and language delay / disorder.

How is your son now. My DC has just been diagnosed with Autism. Very little still x

Hi OP. My son was diagnosed at 3. Had less than 10 words (pointed to his siblings/guided your hand.) What I remember most of that time is joining support groups and being shocked by the negativity of other parents and carers. One told me when her son was diagnosed she went to bed for three days. I couldn’t understand that. I promised myself I would try to take him out of his world and into ours. It’s been successful. This has also shaped my life and career. You are a Warrior Mum. You are going to pick this up and run with it xx

I think its only natural that you will see the more negative side online, as people are actively seeking support and guidance to navigate challenging situations.

I wouldnt change my child for the world, but I would change the world for him.

Thank you so much. It's so wonderful to read all these posts. I feel everyone online about parenting autistic children is so negative and it's just so lovely to read about parents really valuing and loving their children because of their autistic traits and not just despite them 🥰🥰

I dont know if I can say whats been "most helpful" because I feel everything has contributed, but...

Occupational therapy - very helpful in terms of supporting school to manage the environment to get the best out of him - where he sits, minimising distraction, mivement breaks etc. We are very fortunate that the school is very ND-aware and find that a lot of these strategies help lots of kids so they are a natural part of things rather than standing out as specific to our child.

SALT - we managed to get a very neuroaffirming SALT who is autistic with ADHD herself. Again, school have been great at being open to receiving training from her in terms of Gestalt language processing.

EHCP - he has 1:1 adult support specified, which really helps in terms of them delivering his OT and SALT interventions.

We are also fortunate that we dont have any other children, so we have the time, energy and finances to be able to afford things like private SALT (NHS discharged him as soon as he could speak clearly, despite this being essentially non-functional) and EdPsych and 1:1 swimming and music lessons etc. We also dont have to consider the needs of any other children, which makes life much easier.

In terms of it being obvious, you can just tell. He is uninhibited and lives his life for the full sensory experience. E.g. he cannot just... walk down the street. There's running, jumping, hopping, spinning, touching things etc. He doesnt respond in the way youd expect when someone interacts with him. His vocabulary and manner of speaking is not that of an 8 year old, it consists of mostly learned phrases and reciting previous interactions which are often out of context and usually on a loop. He stims openly, usually hand flapping when hes happy or excited. Life isnt without its challenges, but in the grand scheme of things these are relatively minor. We were at an attraction at the weekend and he got most upset that people werent following the rules on a piece of equipment. We had to explain that not everyone will follow the rules, and that he just needs to worry about himself, if hes following them its ok.

He is the most beautiful child and he steals the heart of everyone who meets him.

Sorry to jump in on another comment , but I also ‘knew’ when my DS was a baby/young toddler although everyone else thought I was bonkers. My DS was a terrible sleeper , he would honestly clusterfeed all night until 5am. He needed movement to sleep , I remember pushing him in a pram in pouring rain around the garden so he could nap. He detested his car seat and would go mad when put in it. He was extremely restless - the other babies/toddlers at library story time could just sit on their parents lap but my DS would constantly be shrieking and squirming in a way that the other kids weren’t. Screamed in the bath. He was just ‘difficult’ and I felt like such a failure that everything was so hard. Couldn’t go to mum/baby coffee mornings where all the babies just slept in their pram or lay there looking around as my DS just would go bananas.

Having another baby who is now a toddler and seems neurotypical was very validating in showing me how much easier babyhood can be. It felt more like the experience my peers had with their children. I feel like I could do a long haul flight with my second child if I had to whereas I had to brace myself to do a supermarket food shop with DS.

As soon as he could walk, he was hand flapping, spinning, walking on tip toes, inappropriate laughter, lining things up etc - there were a lot of the classic traits including losing sounds and I just had a gut feeling so I followed it x

this is another wonderful post.
Can I ask:

• what interventions did you find the most helpful and how often did you have them?
• (if you don't mind asking) when you say he is still "obviously autistic" could I ask in what sense?

@AutismMum2017 could I ask how you knew at 10 months? X

No problem xx

I second applying for an ehcp as soon as possible. If nothing else, it gives you more options when the time comes.

Mainstream isn't the be all and end all. My children were utterly destroyed by going to a perfectly nice mainstream primary that couldn't meet their needs. One has been flourishing in a special school and I have every confidence that he will be able to take some gcse's. I dread to think what would have happened without the special school placement.