Autism - then and now

[joe12]

My lovely son is 4.5yo and has been referred for an ASD assessment. He is verbal (was completely non verbal until 3yo so this feels amazing) but not conversational yet. He uses speech to let us know what he wants, if he's hurt himself or scared, to label things and he loves singing nursery rhymes. A lot of echolalia from the TV too. He's a happy little soul, mad about pirates, loves playing with his toys and acting out pirate scenes 😊. Enjoys nursery but diddles about by himself and isn't interested in the other children at this stage. Sleeps well. Eats ok. Isn't toilet trained. Obviously the speech delay and his understanding is behind. Does know all his colours, alphabet, numbers, things like that. Seems to have a good grasp on what most things are. Have deffered his school start for a year (Scotland). Did anyone else have a child like my boy at 4.5? How are they doing now? I know every child with ASD is different, but still I'm interested to know. Cheers

Following with interest.

Hi OP, I'm not in your position, but I have worked with lots of pre schoolers who have been diagnosed with ASD and taken part in assessments. I sometimes meet the same children in their school years too, through work. You are absolutely right to say each child is very different and it's very much a wait and see situation. I've had some wonderful surprises when meeting some children in late primary school and finding they have achieved so much more than I might have anticipated, based on their early years. Your son sounds absolutely lovely - you must be so proud of his progress. 🤩

Sounds like my boy at that age 10 yrs ago. I'll post a reply in the morning.

Sounds like my son. He’s now 16.

He attends an ASD specialist school - he’s dry in the day but wears a pull up at night and to open his bowels.
He is VERY verbal, a lot of his conversation remains as echolalia, plus communication to get what he wants and to discuss his specialist interest which is Marvel comics. He has a dry and funny sense of humour!
He is in a class of 4, he doesn’t have friends per se but it doesn’t bother him.
He has a lot of sensory and anxiety issues. He is unable to be left alone inside the house and unable to be allowed out on his own.
Has learning difficulties and hasn’t done his GCSE’s but I’m happy about that. They’d cause him too much anxiety.
He can be kind and loving and tells me he loves me. I’m very proud of him.

11yo autistic DD here. She had some similarities to what you describe with your DS at that age but the extent of her problems didn’t surface until a little later, and she was diagnosed at 6 (privately due to 4 year wait with CAMHS). The lows have been bloody tough: school avoidance, self-harming behaviour, frequent meltdowns and terrible sleep..… however, the highs have been amazing - she’s discovered an incredible love of music and drama, is a gifted performer and writer and has starred in every play/concert she’s been in - it’s been a dream to watch her succeed in these areas despite her social difficulties. She’s honest, kind, witty, creative and a genuinely pure soul; she’ll probably never fully enjoy mainstream school as it simply doesn’t meet her needs (we’re currently battling the LA for an EHCP to help with this) but on a good day I feel much more optimistic than I did at the start of all this when I knew nothing about autism. So overall OP, I’d say it gets better! Just make sure you look after yourself too, and be prepared to be a fierce advocate for your DS as there’s still a lot of ignorance around. He sounds wonderful by the way!

My now 10 year old DS was very similar. He could read at 2, but didn't comprehend. It's no bearing on what your DS will be like because ASD is so variable, however... Now....

He never stops talking EVER. He's social, has friends, drives me nuts with 'meet ups' (not allowed to call them playdates anymore). He's well behaved & it turned out the comprehension was 'I read it, why do I need to understand it?' rather than cognitive. He's academically very smart. Physically he has low muscle tone so struggles at sport & gets upset because he can't do it.

We struggle with a lot of things, though. He can be rude (no filter) and struggles with self esteem and it is emotionally draining propping him up & trying to improve his well-being when a minor problem occurs.

Hi OP my son is 4.5 yrs old and on the waiting list to be assessed. When he started nursery I was desperate for them to see what I see, and by the grace of God the teacher and head teacher monitored him and made the referral. Apart from the same speech issues as your little boy, toileting was the big issue. He wouldn't say when he needs to pee, could only empty his bowels in nappy by sitting in comfortable position. School really wanted him out of nappies so we agreed to just go for it. He'd go to nursery no nappy, get taken to the toilet and every day wet himself. With progress back and forth we have finally got there. I'd say it took about a good year. In that time I persisted in him using the toilet to empty his bowels. He wouldn't do it so I'd let him have his nappy but eventually I got fed up as well and didn't let him have the nappy. So he eventually did use the toilet. And with practice it's now his routine. There were a lot of peeing accidents but with his bowels he would hold it in. So i took advantage of that as he would eventually get depserate and use the toilet. Lots of praise and love as well helped. Currently waiting for speech therapy programme but his speech has come along very well but lots of echolalia remains.
I think I've learnt that I don't need to panic and feel hopeless. He slowly but surely makes enough progress even when it feels impossible. Your little boy sounds amazing and you will feel so proud of him every step of the way x

Hi, my son, now 17, was almost identical to your son in interests etc, except he wouldn’t eat much apart from a very restrictive diet of yoghurt and chicken.
Since then he has been in mainstream school, managed ok, few friends but we have kept him busy with constructive actitives after school so he didn’t miss out.
He got an epilepsy diagnosis at 13 to go with Autism.
covid was a bastard for his schooling and he didn’t do well in his GCSEs.
However as soon as he could specialise subjects to those he loved in 6th Form, he is doing really well and on for triple Distinction in BTECs. He eats a wide diet now, including spicy curries.
If I had traveled back in time to tell me this when he was 5, I would never have believed it. Trust your instincts, play to your child’s strengths and interests. Find opportunities. It is bloody hard work and not without taking its toll on me mentally, but things get better as they grow.
I miss the days when he would line up toy cars for hours on end. Time flies, and even though it can be tough, find your tribe to support each other through. 💐

Oh I didn’t say that my 17 year old is looking at universities. This felt impossible. I would never ever have believed it.
Non verbal, then echolalaia, hardly ate, in nappies until late, wasn’t dry through the night until age 11 etc.
A lot changes over the years. I firmly believe that finding the right people for friends to get you through will help.

DD14 with ASD and ADHD. Started out pretty similar.

What I really noticed around year 5/6 was the masking and exhaustion. She was struggling with large classes and noise and being ignored because she's quiet but clever.

I took the decision, which I am lucky I can do as a lone parent in a decent job, to put her in a small private school with class sizes of around 12, two classes per year.

She has thrived in this environment.

Find the path that works for your individual child.

My daughter was very similar- she is 10 now and still quite a happy little soul. She uses more language now, but it's quite broken (e.g., she'll say 'Liz was kept be silly with me' instead of 'Liz was being very silly at the table in class'). She does have more interest in other children now, but tends to enjoy being with her younger cousins who still want to play games for younger children. She loves 'lift the flap books', singing to Matilda and playing with her marble run. At 4, I despaired that she hardly spoke and wouldn't eat anything that wasn't already in a tiny bite sized piece. Seeing her grow has been magical :)

Your DS sounds like mine was 10 years ago - speech delay, echolalia etc. At around 4.5 something quite amazing happened and it was like his whole brain rewired itself, at first I thought it was due to play therapy he started but realised it was neurological. It was like suddenly all these concepts he didn't get before suddenly clicked into place, it was like a daily miracle and quite emotional. After about 6 months he settled but by age 5.5 we had a very different version of autism than the one we thought. When he started mainstream school at almost 6 (a year late) the autism was almost invisible. His behaviours increasingly became more like ADHD which he was diagnosed with at 10.

He is 15 now and doing really well at secondary school. The transition was hard as organising books etc is very tricky with ADHD but he managed. The school grading system has worked well for him, he was lazy about homework in primary school but it motivated by numbers so works hard now to achieve a % he wants. He is academic so is generally an A student. He is an amazing athlete and plays 2 sports at club level and one at county level so our weekends are spent driving around the place for matches. He is also on 2 school teams, so thats 5 teams in total!! He is very buff as he needs high impact exercise for sensory regulation and this obviously helps with his sports. He goes to the gym any day he does not have training, sometimes both in a day. its a bit obsessive but he needs to do it. He is a very outgoing confident boy and is also very good looking. I feel like we live a bit of a double life because on the face of it i'm describing a golden boy who sails through life....

BUT - home life is very difficult. Anyone living with ADHD will say how headwrecking it is, leaving things lying around, forgetting to close doors and drawers etc. These are all minor. The bigger issue is his attitude. Since about 9 his behaviour has been described as oppositional, he likes to argue and ridicule anyone who disagrees, he demands things and comes across as entitled and bratty, sometimes verbally abusive. His mood dictates everything, I see we possibly helped create this monster by giving too much leeway but we had to choose our battles so carefully every day. Covid lockdowns were a nightmare for him and in some ways the negative patterns were really laid down here. At school he is more pleasant and he is always laughing and messing with friends so there is a huge element of masking, and a release when he comes home which involves being nasty to his family. Its very hard to know what is ADHD, ASD, hormones or just being spoilt. He has a good heart in there somewhere and hates injustice of any kind and loves his dog.

He is hugely popular on the face of it but cant hold friendships. He develops a group of friends then after a few months gets pushed away. He had settled well in secondary with a nice group but they dumped him and one kid was kind enough to explain why, and it was all the same behaviours we see - interrupting constantly, arguing pointlessly, dominating everything and just being annoying. This was a wake up call and the first time he really acknowledged he has an issue. Intervention is almost impossible as he will not cooperate, last psychological assessment was a disaster as he said she was a nosy bitch, and he refuses to take ADHD meds as he is "not a f*ing retard" - you get the picture .

The good thing about a lack of social cues is DH is very forward and finds new friends quickly, being talented at sports and good looking helps as he comes across as the "cool kid". He will for example go to a teenage disco alone cos he knows he will know lots of people there. He has recently latched onto a new group and they are great so I'm praying things work out for him now.

Sorry OP that was a bit long but I might as well be honest. Sometimes i feel we have a lot on our plate but it depends which "hat" i'm wearing. As the parent of a child with SEN i'm really really lucky but compared with NT children life is a struggle. I find it hard to talk to anyone because most parents of kids with SEN would think I have it easy by comparison but everyone else tells me he is just spoilt. Overall though he will live independently, almost definitely go to university and have a profession (he already talks about this) and hopefully work on himself so he can have relationships so he will be ok.

Thank you so much everyone for the responses. Been so helpful and interesting to read x