Worried about my DS, likely autism

[andtheywereallyellow]

I’m struggling to manage my feelings about this. Please don’t come for me, I know other people have it 100 x worse than me.

My DS 3 (4 in January) starts school next Sept. He is likely autistic (we are on the pathway and professionals have said to expect a diagnosis). He’s speech delayed, that is the most noticeable thing. He holds zero conversation. He is a gestalt language processor (talks in chunks of language/phrases). He has lots and lots of gestalts and single words but it’s very scripted.

I’m so worried about his lack on understanding and that he never follow instructions, even such basic ones like “pass me x”. He just doesn’t answer or do anything. He understands routine things like “get in the car / dinner time / bedtime etc”. He can recognise some colours and numbers but it’s not reliable.

He’s had a hearing test and is having private SLT and we’re applying for an EHCP.

School applications open next month and I’m petrified. I can’t see he’ll manage in mainstream but we’ve been told he’s not server enough for a special school.

He shows no signs of potty training. We’ve tried with no luck.

I’m so worried about the future. Will he get a job, drive, live independently? I know these are stupid questions as he’s way too young to predict but it’s on my mind so often I’m struggling to not worry. I’m also worried about how it will affect his 3 older siblings. I feel like they’ll suffer.

Has anyone got any tips on how to manage this?

It’s one of those situations where you just won’t know until you’re there I’m afraid. You’ll likely get more of a transition between nursery to school (if your child goes to nursery?). My son’s nursery did a handover to my son’s primary school and he had a couple of extra visits to the class and to meet the teacher. Every autistic child is different and the environment will have a big impact on how they deal with school. It is absolutely possible for an autistic child who needs 1:1 to go to mainstream primary. It’s scary thinking about the future but just focus on how you can continue to support him now.

Look around special schools - fight hard if you have to - if you goes to mainstream he could be stuck there for years - I’m sorry to be blunt but I’ve decades of experience.
An EHCP is just a piece of paper - funding is a drop in the ocean and rarely can mainstream fund it.

He doesn’t sound ready for school. Do you work? Can you keep him at home for an extra year and see how it goes?

I don’t work so that’s possible. I’d been advised not to hold back by various professionals though

No one can say how things will turn out. But my youngest is autistic, late to potty training, language issues, couldn’t cope in school but not disabled enough for special school. Even a few years ago I thought if he could get a handful of National 5s he’d be doing great as his education up til then was a complete shitshow

he’s nearly 18 now, left school with 6 highers, at college and hoping to go to university in a couple of years. He passed his driving test first time, he’s got a little part time job, a car, and a group of nice friends

Even 5 years I’d never have believed how well things would turn out for him. So while no one can give you guarantees for your own child, children with autism mature and can flourish in their own ways too x

If you can’t get him into a special school, surely a year at home would help him and give you more time to fight for a place for him? I know the vast majority of professionals involved in autism diagnoses are obsessed with school being the best place for autistic children, they all think that all autistic children want rigid rules and timetables and it’s just not true. As long as he is spending time with other children and receiving a decent amount of your attention, even if you can’t home educate long term, an extra year would still help. If you look into home education meetups near you, you will most likely find a whole community of neurodivergent kids.

Who has said he isn’t severe enough for a special school? It’s the assessment by the Ed psych for the EHCNA that decides that. Has he had that yet?

There are often units in mainstream schools for specific additional needs eg speech and language. This is often more achievable than a sen school for primary. But even if he doesn't get a place at a unit or sen school, he won't be left on his own in mainstream if he has an ehc - he will have a TA. The issue is the number of hours he qualifies for. I suggest you contact SOS!SEN to ensure that the ehc is correctly written and provides adequate support.

The Ed psych assigned to access him for his EHCP is the only person who can decide if he needs a special school. Don’t listen to anyone else.

Everyone in education is obsessed with schools being the best option. They are indoctrinated and don’t know any different. It’s so ingrained in our society. But there are other ways to learn and socialise if you have the time and energy to seek them out.

good luck x

Does he go to a nursery linked to a school? Surely that's the best option as staff will already know him and his needs and be more likely to start pushing as will want funding if he requires a 1:1.

Unfortunately, no one can predict the future as every child is so different.
My DS was very similar to yours at 3, and was diagnosed ASD at 4. He is now 7 and can now hold conversations and has an amazing vocabulary. He does still script from things he’s heard.
He attends a specialist provision attached to a mainstream school, but I had to fight for that, as it was declined as first.
Feel free to message me, I remember how daunting it felt how when DS was that age.

I am in the same position with my wee girl. She is 3.5 and at nursery (only for 1.5 hours as waiting on 1 to 1)
Gestalt language learner, potty training a complete failure multiple times. On waiting list for autism assessment. Have went private on speech and language therapy and starting occupational therapy in Jan hopefully.

Its so hard npt to wonder if there will be any improvement. Some days it seems she is and others are completely demoralizing.

She has done one word requests at times but its really inconsistant.
Wish I had got her help sooner.

Hello. My son who is 8 is autistic and some of the below sounds familiar. At age three I couldn’t imagine how he would cope at school but I felt he wasn’t severe enough for specialist.

he did go to mainstream. We only achieved potty training at age 3 and a half. He didn’t have the language to ask to go to the toilet when he started school but he coped with single words like ‘wee wee’ instead to get by.

his private speech therapist carried on seeing him at the school and she recommended this primary school as a good place for him to go. His primary school was amazing and he was very well supported and always happy there. He had many adults there who cared for him.

he is now at a specialist school. He is an austism specialise school where there is a wide range of needs. But he is in a class of 6 children. In his first year he learned more than 3 years of mainstream.

for now it’s so hard to see into the future. At age 3 I could never have foreseen my son as specialist school but he is happy and thriving.

at this stage I would look arround for any Sen coffee morning and stay plays. I got most of my knowledge and understanding from parents who were a year above where I was and they would great for sharing what they knew. Sen parents just understand.

also I am in Surrey - this county is notorious for its awful Sen support

I was a primary school teacher for many years. I’ve taught many children with autism who were seen as ‘not severe enough’ for special school. I had one child with me for four years because I taught mixed ages classes and they moved up with me when I went to year 5/6. This particular child was very obviously autistic. When they first started school, there was a settling in period required. Was still not toilet trained, had few words, was quite deregulated. However, this child blossomed in the most beautiful way. I got told many times by their parents - oh we don’t think they will manage that eg the sensory aspects of a group swim lesson, going on the Y6 residential. They defied all expectations all the time. They went on to high school and even I was holding my breath to see how they did. The child came to see me after starting high school - so full of life, energy and excitement. My point is - I’ve seen so so so many children with autism absolutely living their best lives and it doesn’t mean your child’s future is bleak. Or yours.

What I would strongly advise is a smaller school. Small village school or a school with 100 children or less on roll. In small schools all the children know each other really well, and all the teachers know every child, and the environments are often much much less over stimulating and overwhelming.

A staggered or phased start is sometimes recommended and can be a good choice.

And have a look at local schools with specialist autism hubs.

It can feel overwhelming to think about long term needs, and it's often much more productive to take smaller steps and support immediate needs. If there's going to be an improvement over time, it will be achieved by taking things a step at a time and getting as much support in place now as possible.

You say you have been told DS isn’t severe enough for SS, but what do you think? Too often parents are told their DC isn’t severe enough for SS when that isn’t the full picture. With an EHCP, for schools that are not fully independent, there are limited reasons the LA can refuse to name your preferred school. Personally, I wouldn’t be taking the LA’s EP’s word as gospel either. Many LA EP reports are poor.

The LA should not be making decisions based solely on EP reports. The LA must consider all evidence. Sadly, LAs too often pay lip service to this are ‘consider’ and discount anything that doesn’t fit the narrative they want to portray. If you have to appeal, SENDIST certainly will.

Personally, I wouldn’t keep DS at home a year. If you do that, the LA has even less incentive to issue a good EHCP naming a placement that can meet needs because LAs know a proportion of parents would continue to make their own arrangements rather than appeal. It is easier to get support if you stay in the system. Plus, by the Easter DC would be compulsory school age need to be in education, whether at school or otherwise. And unless it was written in the EHCP that DS would be educated in the year below his chronological year group, if you kept DS home for a year, it is likely he would then start in Y1 rather than reception.

Has your son already had an EP assessment and EHCNA? Who has said he is not 'severe enough' to go to a specialist provision? Just because someone has said that it doesn't mean he can't go to a specialist provision.

I would look at mainstream schools with ASD bases and specialist schools. How far in the process are you of getting the EHCP?

Evidence is key so start making detailed notes and gathering evidence from your sons HC professionals.

The most important section of the EHCP to focus on is Section F, supported by Section B, to secure the right placement in Section I.

Some c&p info for you:

Section B — Special educational needs
This should fully describe your child's difficulties with learning, communication, sensory processing, social interaction, emotional regulation and any other relevant needs. Missing or understated needs can weaken the case for specialist provision.

Section F — Special educational provision
This is often the key section to scrutinise. It should specify the support your child needs, including the nature, frequency, duration and expertise required where relevant. The provision should be detailed enough to show what a school must deliver.

Section I — Placement
This is where the school should be named. Your evidence should explain why your preferred special school is appropriate and can meet your child's needs, including the provision set out in Section F.

Couple of extra comments.

I have two daughters with autism (now adults). They both attended the same lovely infant school but they went to different juniors. One of these was a small, CoE school and the other was a huge community school and I have to say that I would recommend going to a bigger school if you can - they have a lot more resources and more varied staff, more options basically. The smaller school was so old fashioned - the staff had been there for decades and didn't like anything new and were completely unprepared for my daughter. The bigger school had experienced teachers but also lots of newer ones and they understood sen much better. They slso had bigger grounds, more support workers and better playground supervision. They had dedicated emotional support workers and a really experienced senior- at the small school the deputy head covered it.

The other thing i would say is that at a tiny school your child may have no one like him - the bigger schools can have a wider variety of children.

Also, i wanted a specialist speech and language school for my daughter for secondary but school told me she wouldn't even qualify for an ehc. I applied myself and got it and the place. Head was furious. Here's the thing- a lot of people only look at behaviour. If your son is quiet and not upsetting anyone, he is in danger of being overlooked for help. And someone might take one look at him and say he doesn't need specialist - this is why you get the reports done so the decision is made on needs, not on presentation. And imo you should take advice from ipsea or SOS!SEN as you want to get it right first time and it's easy to be misled by professionals, even if they sound supportive.

Thanks everyone for all the lovely replies. I was expecting people to tell me to toughen up!

He’s at a preschool but it isn’t attached to the local primary school (there isn’t a school nursery). The local school is three form with one big classroom.

I’ve looked at a few other schools but feel totally confused. Some people are telling me a bigger one (like our local one) is best as they’ll be more sen provision. Some are saying small is best but then I have the issue of getting three kids to and from different schools at the same time.

I did see a sen unit attached to a mainstream school but a lot of kids were non verbal and stimming a lot, although he could be in there when needed and mainstream classroom the rest they said.

I did wonder about whether to defer a year. A few people said no get the support at school asap. Would it also mean he’d have to skip reception the next year? Also I’m not sure whether his preschool would keep him on. We only get 15 hours funded now so not sure what would happen.

The educational physiologist would assess him but I’d imagine this would be after applications close.

@roaringdragon I think he’ll fall between mainstream and sen

I don’t think it is a blanket big vs small. I think you need to look at the individual schools and look at DS’s individual needs. Big schools vary just like little schools do. What works for one, won’t work for some others.

Have you looked at other units within mainstream? They vary a lot. How they run and the cohort they cater for varies between units.

If DS is 4 in January, ordinarily, you wouldn’t be able to defer a whole year and have DS start in reception. DS would become compulsory school age for the last term of reception year. He would then either need to be in school or other arrangements made such as you electively home educating. If DS didn’t start school you would be able to keep the early years funding for the 2 terms before he is CSA. With an EHCP, it is possible to get being educated outside of DS’s chronological year group included in the EHCP despite not being summer born. Although you would need evidence and some people have to appeal for this.

Has an EHCNA actually been requested yet?

Are there any schools with autism hubs ?
In my LA we have two special primary schools one for childdren with moderate to severe learning disabillity and autism and one for children with severe to profound learning disabillities and autism
But we also have a few mainstream primary schools with autism hubs for those children whose needs cant be met in mainsream but academically to able for a special school.

Hi OP, my son sounds similar to yours. I mainly just wanted to say that I completely understand how you feel and your worries re the future. It’s utterly agonising not knowing what sort of life my son might have.

My son just started reception at mainstream school, he’s 5 soon. So we’re about a year on from you. If I could go back I’d tell myself to fight and fight and fight for a SEN hub/resource provision placement. I went along with the idea that he’d be fine in mainstream - 6 weeks in and I’m beginning to see we’ve made a huge mistake.

I've been through the same. The worry about the future was really impacting my mental health and ability to enjoy time with DS. It still creeps in sometimes but for the most part I focus on the next milestone and no further.
I too was terrified about how he would manage in mainstream, the summer before he started school was horrendous and the first few weeks at school. I worried about their ability to even keep him safe, never mind educate him. He's in year 1 now and it's going okay. He toilet trained in the last Easter holidays, he's occasionally having back and forth conversation, he is only slightly delayed with phonics and numeracy. His progress is still slower than his peers and the gap is getting larger. He may need special school for KS2, but I'm just taking it a term at a time and celebrating every little win he has.

Might be worth reaching out to autism.org.uk? Their parent-peer support when I used it in crisis earlier this year was amazing. There will be a local group (they often have an FB page too) and emailing the coordinator of that section can help you be put in touch with parents with children similarly presenting, at the same stage of the process or out the other side.

I am so sorry not to be able to offer more myself as this is outside my DCs experience of autism, but please know there is a supportive community out there who are full of people willing to help, so no need to navigate this alone.