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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Autism, 4 years old and now...

23 replies

rwm92 · 30/07/2023 22:38

Yes, I know all children with ASD are different. Yes, I know that nobody has a crystal ball for my 4.5yo son's future but after a tough week with him, I'd really appreciate some positive stories. Thanks ❤️

OP posts:
Ponoka7 · 30/07/2023 22:43

Is he verbal? What's been thought this week? My DD went to a SEN school, she has LD's and speech and language issues. But cooking was her passion and she's worked her way up to working in catering in the NHS. One of her friends from school won't ever work, but she's very involved with theatre and is happy. Another friend is a HGV driver. Another lives in supported housing, has an assistant dog and again is happy.

rwm92 · 30/07/2023 22:50

Ponoka7 · 30/07/2023 22:43

Is he verbal? What's been thought this week? My DD went to a SEN school, she has LD's and speech and language issues. But cooking was her passion and she's worked her way up to working in catering in the NHS. One of her friends from school won't ever work, but she's very involved with theatre and is happy. Another friend is a HGV driver. Another lives in supported housing, has an assistant dog and again is happy.

Hi Ponoka. He is verbal, but not conversational yet. He uses speech to get his needs met and is constantly labelling things/singing/chatting away to himself. I'm really grateful for this as he was non verbal until 3. It's just been hard this week due to the holidays, and not being able to reason with him like I do with my NT child. Thanks for sharing about your daughter, that is really amazing 👏❤️

OP posts:
FuckNuggets · 30/07/2023 22:56

My dd was non-verbal until she was 2.5-3. Your DS sounds much like she was. She's 20 now, she's just finished a supported internship (specifically for young people with Autism) through our local college and is starting a carpentry course in September. Her primary school years were a bit bumpy, but we got her into a fantastic special secondary school and she thrived. She has friends, a bit of a social life (she's very much an introvert) and is quite independent now. I too worried about what adult life would be like for her back when she was small, so I think that's a normal worry for most parents of children with Autism.

Bex268 · 30/07/2023 23:08

3 years and five months and my little one is having a tough week too. No words yet 😢 he has said a handful of words in his life but never more than once, very sporadic. This is causing issues for us all now as he wants to communicate. I wish I could help him. He’s clearly bright - almost potty trained fully now and has a fabulous memory. I worry about my little gorgeous guy. Sending hugs

Lannielou · 30/07/2023 23:25

My oldest son is 20, school was horrendous, he left without any gcse's. He went to college and did bricklaying, but couldn't get an apprenticeship. He has worked full time at maccies for the last two years and has thrived. He is shortly starting a job with South west water.
He drives and owns his own car, he has friends and will live independently. I am very proud of him.

rwm92 · 30/07/2023 23:34

Lannielou · 30/07/2023 23:25

My oldest son is 20, school was horrendous, he left without any gcse's. He went to college and did bricklaying, but couldn't get an apprenticeship. He has worked full time at maccies for the last two years and has thrived. He is shortly starting a job with South west water.
He drives and owns his own car, he has friends and will live independently. I am very proud of him.

Amazing 👏 sounds brilliant. What was your son like at 4? Was he verbal?

OP posts:
IncompleteSenten · 30/07/2023 23:37

My eldest son was dx at 2.5
He was in nappies until 6.
He didn't talk till he was 7.
He smeared his poo. Had epic meltdowns. Was very challenging.

We were told he'd never talk and we should use makaton. That we were in denial. That he needed to go to a special school.

He was violent - hitting, buying, kicking. He once broke my nose.

He is now 24.
He has just finished his degree and got a 2.1. He has been accepted to do his master's.
He drives, owns a car and has bought 2 investment properties in Kenya. I remember posting on here over the years about his challenges and that he'd never lead an independent life. I was wrong. He will have some independence with the right support because he is still very vulnerable in many ways, he's unlikely to be able to live alone for example but he has achieved far more than we were told he ever would.

You can never tell. My youngest dx with ASD at 3 and passive inattentive adhd later was the complete opposite of my eldest in the early years and now at 22 is extremely challenging and violent.

Sonolanona · 30/07/2023 23:46

My son is 26.
No speech til he was 4..and then very echolaic. Went to special school, and onto a special needs course. Has learning difficulties (no exams or anything) Then had a supported emplyment scheme with Mencap.
He was supported into a job at our local Asda part time.
He's now full time, has been there 7 years and has more savings than I do :) He is much loved in Asda and is probably their best employee as he's never off sick, he does his job perfectly according to the rules !
He has one friend from special school and they go to the cinema together but otherwise is at home and generally pretty content I think.
We've had massive challenges along the way, but considering how he looked at 3...
He won't ever live independently, marry, drive etc but actually his life is pretty decent!

HippyPippy · 30/07/2023 23:55

Hi op, my eldest who’s now 16 has ASD. At 4 he’d only just started speaking a couple of words. He was involved in speech and language, nursery were very supportive. He had his own little ‘circle mat’ at story time, was allowed to use a different door for entry and exit to not get sensory overload at drop off and pick up etc.

He had 1-1 support all through school and had all the challenges you’d expect such as any change to his routine was met with melt downs. It’s a steep learning curve but with knowledge and support we were able to implement strategies in place to minimise outbursts such as social stories, lots of mental preparation for anything different happening E.g if there was a school trip we would go through every step of the day - the coach will arrive at school at 9:30am, the journey is about 90 minutes, then you will arrive at the destination- (bring up the destination on google), this is what it looks like etc etc.

As time went on, we were well equipped on how to respond and deal with his challenges, we had the tools in place where possible and meltdowns became less and less frequent, stopped altogether by the age of about 10.

He’s just left school, we are awaiting GCSE results. Realistically we all know they’re not going to be great results, but that’s ok, we’ve never pressured him in any way, and have always encouraged him to do his best. He already has a place in college in September to do ‘Independent Living Skills’.

He is an absolutely lovely young man, we couldn’t be prouder. His teachers all adored him and he has a few friends who also have ASD, they are lovely young people too.

He’s very chatty, has a great sense of humour and I wouldn’t change a thing about him.

savemefromtheteens · 31/07/2023 00:14

I'm an autism mentor working with students at university. The young people I work with are all amazing. One young person I work with didn't talk until the age of seven, she is now fully independent, studying for her masters and has some great friends.
Many of the students that I work with struggled with meltdowns when they were younger, particularly before high school age, but found their feet in high school.
Lots of my students reported needed some support when navigating friendships at school, but not everyone. My son who was diagnosed at age 4 always felt different and struggled at primary school, but found a fantastic group of friends in high school who he has just completed his gold Duke of Edinburgh with, in addition to a lads holiday. My two neurotypical children have struggled much more with friendship issues.
The ASC students that I work with are studying a range of different subjects, some are studying Stem subjects, some humanities, and almost half my students are studying either human or veterinary medicine.
Have a look at the National Autistic Society website. No one can say what future lies ahead for your son, just educate yourself on how best to advocate for him until he develops the skills to do this for himself. Some autistic individuals may not ever be able to lead fully independent lives, but some will achieve beyond your wildest dreams.

LaMaG · 31/07/2023 12:08

OP, at 4 DS was diagnosed and talking well enough but mostly echolia and had other communication difficulties, quite rough and high sensory needs. He was a flight risk for example he would immediately try to escape from a room / house unless locked in so anywhere with automatic doors was impossible and he literally climbed out a window onto a roof on more than one occasion. We held him back from school for this reason, he escaped the classroom and ran through a carpark onto a road with myself and a teacher in tow!

At around 4 and 3 months, we witnessed what seemed like a miracle. I posted about it before but I don't go on about it as it might give people false hope, but since you did ask... It was like he woke up one day and his whole brain began to rewire and everything fell into place. Every day some autism trait would disappear, or he would learn a new skill. By 5 he was a completely different child and seemed a little hyper but no visible autism. On his first day of school he walked in confidently and I remember he saw a boy crying, took his hand and told the Mum, 'Dont worry about him, I'll look after him' and off he went. He excelled in mainstream school, top of the class in everything but a bit disruptive so needed a lot of movement breaks.

He is 15 now, also with ADHD diagnosis and an A student. He doesn't get any school supports as he opted out of this himself. He is playing a sport at a high level and has a large group of friends, he is one of the good looking popular kids. There is no doubt that he will live independently and will probably go to university. For example he is flying alone next week to another city to visit a family member, its his first time but I have every confidence he will manage airports / trains himself and know when to ask for help. Thats not to say its been plain sailing, while the autism is often invisible he can be very difficult at home, a lot of it is a let down from masking all day. He manages his sensory needs by high impact workouts and we hear him thumping about the house at all hours. He can be argumentative and single minded and arrogant but for the most part is only a % worse than most 15 yr old kids. I do find it hard because I guess I compare our lives to other NT families, but when I put the other hat on and see myself as mother of an autistic child I cannot believe how lucky I am.

Willyoujustbequiet · 31/07/2023 12:27

Dc was non verbal at 4 and in nappies until 6. 1 to 1 throughout school/EHCP

Now in 6th form doing A levels, extremely hard worker and never shuts up. I'm sure they will excel at whatever career they choose. Any employer would be lucky to have them.

They simply grew out of many of the traits.

Eightypercent · 31/07/2023 12:45

We were told DS would never live independently.

He left home at 16 to go to a T&G school.
He won a gold medal at one of the STEM Olympiads.
He travels quite happily nationally and internationally on his own
He's off at a festival right now.
He's at University.

He still worries us silly, but don't they all?

ntmdino · 31/07/2023 12:58

I'm autistic, diagnosed at 45. At 4, I didn't really understand anything about the world. I could communicate factually, in that I could easily transfer information in both directions, but I didn't play particularly imaginatively and I had no idea about interpreting emotional signals; as a result, most interactions with others were fairly unsuccessful, and with other children my age it was a complete disaster. I was, however, starting to figure out that I could learn about these things from TV and film, so for most of primary school I was quite obsessed with watching adult-level films (kids' TV was useless for that). I had no more than two or three friends in the whole time I was at primary school.

I also had to be taught how to function in the world, and my mother taught me scripts and the beginnings of masking (autism has run in her side of the family for a long time, and the consequences of being discovered in those days were...extreme) for all the common social interactions. From basics like "hello" to more complex stuff like weather-related small talk etc, I learned it all by heart. I was a voracious reader, so she'd pick out books that had a lot of that kind of interaction in them, but had also been made into TV shows and films - so I could relate the words that I could remember to the physical nature of the interaction.

Worth noting that I was the stereotypical mathematically-gifted kid, and I have a gift for conceptualising systems (computers, electronics, mechanics etc).

Secondary school gave me a chance to change my approach - I figured out that some skills were more socially advantageous than others, so I put a lot of effort into putting the ones I already had (playing guitar, and maths) front-and-centre to make myself useful to other kids, which made me quite popular. A few years later (around 14) I realised that, socially-speaking, alcohol is an amazing leveller - put bluntly, everybody's an idiot when they're drunk, and my social shortcomings became invisible in a large group of similarly-afflicted folk.

Secondary school was probably the most successful period in my life, up until recently. I got straight As, I had an active social life, I'd assembled a great set of scripts and masking strategies that could get me through any social interactions, I had a part-time job on the side, I even went abroad with my friend group a couple of times, and I was generally very happy. In fact, I even managed to fool my mother into thinking that I'd grown out of it.

When I went to university, I completely fell apart. I couldn't cope with the loss of the social group I'd spent 7 years building. I coasted academically, to the point where I barely graduated. My social skills atrophied, I couldn't deal with making new friends (I couldn't even find a group to latch onto - there were simply too many people to even figure out where to look). Fell into a deep depression and even half-heartedly attempted suicide. It took me years to get over that, and I survived that time by masking more heavily than I ever have in my life.

So, in answer to your question...yes, it gets better. Sometimes, it gets much better - but don't get complacent, no matter how good it gets...any big change can be catastrophic without careful management. If I'd known about my autistic nature, I would have put a lot more effort into smoothing the changes in my life. I got overconfident, as did my parents, and it nearly cost me dearly.

Hope that helps a bit. Obviously, there's a lot more to say, but...not in a forum post ;)

Alongwagtogohome · 31/07/2023 13:04

Following. Ds 5 in November non verbal and seems the worst he's ever been recently. Struggling and losing hope.

Ela1234 · 01/03/2025 09:09

Hi,
do you have any updates on how is your son now a desperate mum in here if you have any updates has his speech come along

Ela1234 · 01/03/2025 09:09

Alongwagtogohome · 31/07/2023 13:04

Following. Ds 5 in November non verbal and seems the worst he's ever been recently. Struggling and losing hope.

Do you have any updates please

Alongwagtogohome · 01/03/2025 20:41

@Ela1234 my son got diagnosed with a rare disease effecting his hips which made everything make sense, he had bad behaviour due to pain and not being able to communicate it.

He's now 6, classed as pre verbal, uses pecs and is an absolute joy. He says words but very rarely, his understanding has increased hugely. He talks jibberish all day. I do 'normal' things to get him used to them, cinema etc. He still has the occasional meltdowns but they last approximately 30 seconds to 2 minutes. He's now in sen school too.
The biggest change has probably been within me. Although I still hope my ds will be conversational, I no longer allow it to consume me with worry or upset. I went through a period of terrible suicidal thoughts and depression and it consumed me for some time. Thankfully I made it through that and although I still have tough times, on the whole things are OK. My ds is incredibly special

Ela1234 · 01/03/2025 20:49

Thank you so much for replying back at me! I feel
exactly as u felt right now! There is no days that I don’t cry or feel down and sad all the time I am loosing all hopes that he will call me mother one day. He’s Turing 5 in August still I napes and very limmited understanding. Am so happy urs has made progress and u that turned a corner and feel much more positive about furture x

LazJaz · 01/03/2025 20:54

My DB is autistic, at 4.5 was non verbal. Is now 37.
Had some early intervention through Bernardo’s and was given a school place in a “speech and language unit” (now known as “asd resource base”) within a mainstream primary (we were very fortunate - the standard was not generally high in the 1990s- things are SO much better now)
Anyway, at the unit he did learn to talk and was in a mainstream class by about age 8/9. whilst school wasn’t the best time, but it was ok. He had a few friends, was kind of a geek, had a GF from about the age of 15
Got two degrees.
Now lives abroad had a very good job that suits his needs and skills, married to a really nice woman who we all like and who totally understands him.
They own two properties, they have a lots of friends and a good social life. They travel a lot. They have healthy pensions and savings. They like their lives
I think my brother figured out when he was in his early 20s that to be happy he just had to embrace himself. Knowing he is autistic has helped him with this - he’s not a “weird horse” but and “awesome zebra”

I have another brother who is autistic but was not diagnosed as a child - was misdiagnosed with various things and his life is … not as positive as the other brothers. Proper diagnosis, early intervention and correct support and accommodation from parents and teachers is essential in my opinion.

My DS is 4.5 and diagnosed with ASD. Can be hard work but re the future I’m not anxious. Not anxious because seeing the two different outcomes of my brothers we took action - had a relatively early diagnosis and have accessed (and will continue to access) good support and we will educate ourselves as parents.

Alongwagtogohome · 01/03/2025 20:55

@Ela1234 do you have anyone in real life who's in similar circumstances? Meeting other parents really helped. My son isn't fully toilet trained yet but has almost mastered it. Everyone is different but all I can suggest is try for sen school if not already and celebrate who he is today. My stress was from trying to get my ds to enter my world. I learnt to enter his instead. That being said do as many activities as you can. I push my son outside of his comfort zone all the time as its the only way to get him used to new experiences. Best wishes to you and your ds. Your GP and social prescribers can be helpful if you need support.

Ela1234 · 01/03/2025 23:47

thank you for this it gives me so much hope xx

Ela1234 · 01/03/2025 23:52

Thank you for replying to my post again! I know few other parents from my son nursery who’s kids were non verbal and now they year 1 have become kind of verbal words only not sentences but they have improved a lot just hoping am living in hope but mental health won’t let me sleep in evening am filled with worry with so many “Wills” in my head. Will ever talk? Will have friends? Will he ever live independently, what will happen when am not here 😭

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