How did your autistic child present as a toddler and how are they doing now?

[justme358]

My DS has just turned 3. He’s a happy little soul, and has bags of character. It was first flagged by the HV he might be autistic in 2022, but the assessment was only put forward this year and it’s a 52 week wait.
I always knew there was something different about him, but being my first I didn’t see the extent of it. As he gets older his differences are becoming more apparent. I took him to a ‘stay and play’ at his new school nursery and ended up crying because I realised how behind he actually is.

To say I’m scared about his future is an understatement, I’m worried sick and I just cannot focus on the present. I wondered if your child is autistic, how did they present as a toddler, and how are they doing now?

There are no doubts he is autistic, it’s just the severity and how it will affect his life.

At the moment he presents with the following:

• can name some objects; SALT said language of a 1 year old. But largely just babbling
• Is echoalic so will repeat phrases he’s heard such as ‘what’s that noise’ for a couple of weeks and then seemingly forgets.
• Gets easily frustrated at not being able to communicate and becomes violent (biting, scratching)
• No real understanding of danger, although does seem cautious when high up a tree
• 50/50 if he will respond to his name. Unlikely to respond to someone he doesn’t know
• Very little attention span, suspected adhd too
• Obsessed with water
• Explores objects by licking them
• Gets overwhelmed by groups of people and sometimes new people
• Eats anything so no sensory processing differences there
• Starting to show signs of wanting to use the toilet
• Self injures during meltdowns such as (softly) banging his head
• Used to do a vocal stim pretty much all day as a 2 year old, but has largely stopped this and only really jumps up and down when he’s happy. Though if you give him a device he will repeat the same audio clip over and over
• He’s able to regulate quickly and meltdowns are usually over in 5 minutes

We went for a meeting at his new school nursery and they think he won’t function in mainstream school and will need to attend a specialist school. I’m heartbroken for him, I always knew he was autistic but I never thought for a minute he was so severe he couldn’t attend mainstream school.

I just wanted to hear from some other parents who have been in a similar situation. I’m trying my best to support him, but I wonder if he will ever ‘catch up’

I am about 10 years further down this journey than you are. (My DS is now 13.) I know it's incredibly hard but I would try and not focus too much about what the distant future holds. (I say this as someone who still wakes up at 3am sometimes worrying about my own DS!)

Your lovely DS WILL develop just as all DC do but it's impossible for anyone to say how, when and what that will look like. I would try and not think about it in terms of 'catching up'. My DS can do so many things I thought he would never be able to achieve (talking, going to school, using the toilet). It was on a different timescale to other DC - and there are still things he may not be able to do independently.

I actually stopped going to activities with him when he was a toddler as I found it too hard. For me, the earliest years before his diagnosis were the hardest. Eventually I found some local SEN groups for parents and DC.

I would also say: it pays to know the law around SEN. Knowledge is power.

This is a good place to get some info:

https://www.ipsea.org.uk/Pages/Category/get-support

I would recommend applying for an EHCP for your DS now. It can take a year to get one if you have to appeal.
I would also start looking at specialist schools - and mainstream schools. There are also specialist units attached to some mainstream schools.

IF your DS does start at a specialist school, he may not always be in one. DC can move settings. I would also say that some DC can make MORE progress in a specialist school as they have the expertise that many mainstream schools don't.

I would also be pushing for SALT now (if he's not already getting any). Look into portage too - this is a play based therapy for DC under 5. You can google it.

If you haven't already, apply for DLA. A DC doesn't need a diagnosis, it's based on need. It's a horrible form as you need to highlight the difficulties your DC has. You can spend the money on anything to improve your DC's life though which can include private therapies or on additional household costs.

This guide really helps:
https://cerebra.org.uk/download/disability-living-allowance-dla-guide/

Your DS sounds lovely and there are some really positive things on that list you've posted.

Hey! So is your dc 2 years away from starting school? If it's 2 years I would say that is far too early to say either way... our local authority Sendco said she would have advised very differently when she first met my ds at 3 and your list of concerns would have been similar mine.
What support are you getting or are they referring for? Do you have an EHCP?

To answer your question my ds isneaerly 6 and in mainstream school last year with a part-time 1:1 this year full-time. His speech is much improved but still echolalic and he needs much more time to process. He is thriving to be honest, we have huge challenges ahead he still really struggles with handwriting for example and socially he does struggle although his class look out for him but his progress has been amazing and most importantly he skips into school everyday so at the moment he is in the right place. I know people however who have had to move from mainstream at various points so for me it is a year at a time with as much support as I can get if one day this isn't right we will look at other options x

Thank you for your response, it means a lot. I’m so pleased to hear your DS is doing well. It sounds like he is thriving. Reading that gives me real hope.

Thanks for that link I’ll have a read. I’ve applied for DLA, he’s had a few SALT appointments, and the school nursery are beginning the EHCP process. They’re also applying for some funding to get him some 1:1 support in the interim of receiving an EHCP. We also attend a couple of groups a week for children with SEN, which helps.

Yes, you’re right about DC developing in their own time, so I will focus on the small wins. Like him being able to tell me he’s tired/hungry/thirsty. A very new development!

Thanks for your message. It sounds like your DS is doing amazingly. And I love the fact he is so happy to go to school! I hope we will get to the same point one day. And yes you’re right - a lot can change in a year.

Yes the EHCP process is being triggered, and the school are applying for a fund to provide 1:1 support. I feel happy the school nursery are getting the ball rolling for him. I hope with the right support in place he will thrive like your DS.

Hi x hope you and your family is doing well. May I ask for an update on your lovely son ? How is coping since the post ? X