Would love to hear ASD progression stories

[SatisfyMySoul19]

Hi everyone .. I have a lovely boy, 2.9yo, who is speech and language delayed and showing signs of ASD. I've had my suspensions for just under a year, and in that time my son HAS made lots of progress. I would like to list his positives as I hate talking negatively about him .. He has gone from no communication to getting his needs met by taking me to what he wants or pointing (I was made up about the pointing, as his lack of pointing was the first red flag I noticed)! His receptive language has really improved! He literally understood nothing, he now understands, NO! Come back, give that to Mummy, go to the bath, brush your teeth, go to bed, time to leave, get in your pushchair, etc. He copies some nursery rhyme actions (when he feels like it 😉) such as If You're Happy And You Know It. He clapped his hands, span around and stomped his feet on command earlier which I thought was really cool. 😊 He's also started to repeat some words (again, when he feels like it 😉) such as down, go, tree. Let me tell you, the day I hear the word Mummy, will be the happiest day of my life .. He has no motor skills problems, he loves toys and has some imaginative play with his ice cream cart. He will walk to the shops with me holding my hand. He's a brilliant sleeper. HOWEVER, today has been terrible 😁 we went to the woods and he was wearing new wellies which were "wrong". I think a mix between sensory issues and not being the same as his old ones. We got home and he was trying to get me to do something with his toy .. I couldn't figure out what he wanted, huge tantrum. I feel for him so much as he's starting to get V frustrated due to the speech delay .. It was just one of those days where one thing after another goes wrong. I had to take myself off to my room to have a cry 😢 I try not to but I worry about his future. It's the not knowing how they will progress, although, I like to remind myself, he HAS already progressed loads. So, I would LOVE to hear your ASD progression stories to cheer me up a bit :) especially if you once had a jumping, crazy, lovely little whirlwind like mine!
Thanks ❤

I am an autistic adult so maybe not the person you want to hear from, but you sound like a lovely mum. The fact that you are so positive about your child and understand that he has sensory needs will help him so much.

I don’t know what I was like when I was 2. I was probably different to your son as I have alway had good language and poor motor skills. My cousin didn’t learn to talk until he was 3. He has managed to get a degree and has been in work but he avoid situations where he has to talk to anybody as much as he can because he gets so anxious.

There can be a lot of progression for autistic people but we will always still be autistic. For all the adults I know sensory issues are a big thing and social situations.

Hello OP. I have a 7 year old DD with ASD.
At your son's age she was very echolaic and I don't think had much of an awareness of the meaning behind the words she was using.
I find my DD gets there but it takes her a little longer than her peers i.e. interests, riding a bike, language etc but she does get there in her own time. I used to really worry about this but don't so much anymore.
She also has a number of sensory issues but it's much easier to manage now she can communicate confidently and articulately. You and your DS sound lovely and I hope the time comes soon when you hear him say mummy.

Although the progression is definitely there, new challenges present themselves and take the place of the old ones.
DD is often clumsy in her attempts at friendship and interacting in social situations and her friendly attempts are often rebuffed.
She is becoming more aware of it herself but helped by her NT younger sister who is able to naturally understand social cues.
I digress but it sounds as though your son is developing and will overcome some of his challenges. The sensory issues will definitely get better once he can articulate what it is he dislikes.
Wishing you all the best.,

@Siablue

I am an autistic adult so maybe not the person you want to hear from, but you sound like a lovely mum. The fact that you are so positive about your child and understand that he has sensory needs will help him so much.

I don’t know what I was like when I was 2. I was probably different to your son as I have alway had good language and poor motor skills. My cousin didn’t learn to talk until he was 3. He has managed to get a degree and has been in work but he avoid situations where he has to talk to anybody as much as he can because he gets so anxious.

There can be a lot of progression for autistic people but we will always still be autistic. For all the adults I know sensory issues are a big thing and social situations.

Hi! Thank you so much for your response. It is great to hear from an autistic adult. My son has quite a few sensory issues .. He can't stand having his nappy changed, but not in the usual way where a toddler resists it, it really terrifies him. I'm guessing it's the sensation of the cold wipe touching his skin .. He is also very particular and organised, he likes things to be tidy and in their proper place. I actually feel like he is really smart. Recently clothing/shoes have become an issue .. He will only wear one certain jumper and I just cannot figure out why .. Is this a typical ASD trait to become attached to certain items of clothing? I just wash it every day and let him crack on as I have bigger fish to fry. I call him Simon Cowell as he is always in the same clothes

I have 3 dc with ASD.

Eldest has severe ASD and learning difficulties. She’s nearly 18 now, but at 2 was non-verbal, and it took a lot of intense interaction to get her even interested in anything. She is now chatty, the most sociable out of my 3, loves watching films and reading stories. She can read and write, loves going bowling, and eating out at restaurants. She particularly enjoys choosing new foods to try off the menu, which is so lovely to see, especially when I remember the more difficult times she had with food, such as only eating raisins for about 2 months when she was around 3 (yep, really, only raisins. Was a nightmare!). She is at a special school (always has been), and has learned so much and come so far. She is amazing.

My middle and youngest are both in mainstream, and cope ok. They don’t have any learning disabilities, but do have various sensory/processing issues. Middle dc is doing really well (she’s 15). Youngest is still struggling (he’s 8), but is at a point where he is realising he is different from a lot of his peers, and it’s bothering him a bit. They are both funny, happy children, popular within their years at school, with good groups of friends.

All 3 of mine are very musical (I often joke that the younger 2 didn’t have a choice - dd1 sang before she could talk, and so both the younger ones were born into a house of constant singing and music), and this is something they have shared over the years which has been lovely to see (although it was particularly cringey when dd2 was bossily arranging toddler music groups into 3 part harmonies and getting grumpy when the other toddlers couldn’t follow her requirements - “but it’s easy, we do it all the time at home, mummy, why won’t they do it right?” 😂 )

@Daisychainsandglitter

Hello OP. I have a 7 year old DD with ASD. At your son's age she was very echolaic and I don't think had much of an awareness of the meaning behind the words she was using. I find my DD gets there but it takes her a little longer than her peers i.e. interests, riding a bike, language etc but she does get there in her own time. I used to really worry about this but don't so much anymore. She also has a number of sensory issues but it's much easier to manage now she can communicate confidently and articulately. You and your DS sound lovely and I hope the time comes soon when you hear him say mummy. Although the progression is definitely there, new challenges present themselves and take the place of the old ones. DD is often clumsy in her attempts at friendship and interacting in social situations and her friendly attempts are often rebuffed. She is becoming more aware of it herself but helped by her NT younger sister who is able to naturally understand social cues. I digress but it sounds as though your son is developing and will overcome some of his challenges. The sensory issues will definitely get better once he can articulate what it is he dislikes. Wishing you all the best.,

Thank you so much for your response! Your little girl sounds great I think it makes us extra proud of them when they have to overcome certain issues. I do worry about him forming friendships in the future .. At the moment he has no interest in other children and likes to play alone, which I think is fine as he is still quite tiny. He does love his big sis now though, playing tickle games etc. I think siblings are the best play therapists

The your comment about clothing- this I believe is relatively common and I think you gave the right approach.
My DD is sensory seeking rather than sensory avoidant but I do remember that up until the age of about 2.5 she would scream uncontrollably at strip lights like in a supermarket.
Very stressful at the time so it must be hard to deal with if he becomes distressed when having his nappy changed.

My DD is 7 in a few weeks and autistic. I think in a lot of ways it's far more marked her struggles now in comparison to her peers, I worry a lot for her future.

HOWEVER, she is the happiest little soul. Where she is now compared to where she was even a year ago is phenomenal. I think you reach a happy point where you stop seeing where they are not like their peers and just how huge their achievements are.

I have happily accepted she is who she is and my focus is no longer on the child I sort of expected to have and she is just amazing. It's definitely easy to disappear into a wormhole of worrying about their future and I think sometimes you do have to force yourself not to.

It does all get easier though.

Also clothing is the bane of my bloody life 🤣 I've accepted it now, she will live in soft leggings and t-shirt with no knickers for eternity for all I care

Dd is autistic, she's currently studying at a Russell group university and is a semi professional musician. Everyone is different but there's lots of positive outcomes

I have a 12 year old with autism, diagnosed just before his 3rd birthday.

OP, he was once a jumping, crazy, lovely little whirlwind like your DS. And he has come so, so far. When he was diagnosed he had just twenty words. He said "Mummy" for the first time at three years nine months, and I was over the moon! He was just starting to talk in sentences when he started school. His speech caught up very quickly after that, and now you would never know he was speech delayed.

He's in mainstream secondary with an EHCP. He finds school very hard in lots of ways (he's also dyslexic) but he is holding his own. He doesn't have masses of friends, but he has one very good friend who is also on the spectrum. He isn't really all that bothered about friends, so this works well for him.

He has his struggles, I won't lie. But I am so proud of him . And he's no longer a whirlwind - its hard to get him out of his room these days!

I went through a phase in my childhood when I would only wear one outfit. I am still highly selective about clothes. Everything needs to made of the right material. I still live in leggings and long sleeve t-shirts. My DS (3) does the same. I think he is developing quite typically but he clearly has some of my quirks.

Thanks everyone for your responses!

This is a great thread OP- thank you for starting it.

I hope more adults come and tell their stories. My dd is 16, in mainstream with ft 1-2-1 and I'm worried about what will happen when she leaves school. She can't cross a road alone, so little chance of her being an independent person. I suspect I will have to give up work when she is 18. On the bright side she's generally a happy, fairly easy young lady.

Adult with Asperger's and parent to child with ASD here.

Regarding the jumpers, I just bought three the same because the first one was so comfy I don't want to wear anything else now. It just feels 'right'. I also don't wear patterns unless they're repeating and not too busy. If you can get your DC another jumper the same it helps to have a spare.

I don't know what I was like at your DCs age but I was lucky enough over time to figure out that I do better with 'facts' in learning terms and went to uni, RG for masters and now work in a senior role. I'm not great with people - not for lack of trying, I'm just not in tune - but have a close relationship with family and some acquaintances/friends. DC is rather like me in this but I'm hoping they find supportive people in life and that they can learn to make that support mutual. I'm trying to stop DC being a people pleaser - it's a natural thing to do when you feel out of step but it's a bad combination with the vulnerability that comes with not having the same comprehension of situations as those around you.

I wasn't diagnosed until this year and it's been a relief to understand all the threads in my life that didn't make sense. I think diagnosis is key as it gives you the framework to untangle the confusion. In short, echoing PP about progressing but still finding sensory and social situations difficult. I have ups and downs in my life but am married with two DC and have managed to put coping strategies in place over the years for most things.

DC is still young (early primary years) and is changing all the time - like most kids. They're a funny, fascinating person but it's also hard to keep on top of all of the things that cause them difficulty and it's quite exhausting trying to find strategies and alternatives that will help them settle and thrive. It's also hard trying to give their sibling the time they need, too. Communication with school is (for me) the single biggest factor in helping DC progress. Understanding how they're coping with that world and the experiences there means I can follow up at home and try to stop it getting too difficult.

I think the key is getting the right support in place, for him and for you as a family.

We have been exceptionally lucky with schools and have fought the LA to get a water tight ehcp with 1-1 in place for him and that has been a major game changer because he can get the individualised help he needs. I am in constant communication with the school, I have taken a view that they can either be my best friend or worst enemy but I will fight for what is right! Thankfully they are on side.

Don’t try to compare to others because there is no point. He is your son and that’s what makes him amazing. Ds is 12 now he will go from watching (and fully understanding) prime ministers questions to bouncing around the garden blowing bubbles to watching Thomas the tank engine! There is no logic but he is happy and that’s what is important.

DS2 is 7yo and is a crazy whirlwind - so much so we nicknamed him Taz (The Tasmanian devil character in the Bugs Bunny cartoons 😁). He’s in mainstream, and very well supported, particularly for reading and writing which he’s behind with, purely because he hates it and it’s a battle to get him doing it. He has endless enthusiasm for those things he enjoys, and during lockdown he made a little video presentation on a homework topic, rather than writing, and his teacher was thrilled!

His speech has always been excellent from an early age, but he’s only recently really started being able to tell me how he’s feeling and what’s bothering him, which is huge. He is a sensory seeker for the most part, and has a wicked sense of humour. He used to scream his head off at nappy changes but we think that’s because he has hyper mobility, particularly in his hips.

Hi op. He sounds like a lovely little boy. It can be hard for them and us as parents though.

My 10 year old is asd. He was very late meeting all his milestones - speech and language, understanding, motor skills etc. He didn't point or wave etc until gone 3. He didn't say a single word to gone 3. He didn't talk much at all until he was gone 4 and going into reception. As well as not being able to say anything he also lacked any understanding of anything. He didn't understand what I was saying to him.

As I say, he is 10 now. He has still has his struggles but doing fantastically. In the first term of main stream school his speech really exploded! He now doesn't stop talking - ever. His understanding his great. His motor skills are better. He used to have no concept of danger but if anything is now the most cautious child. He has thrived in mainstream school with support (think it would have been a different story without the level of support he's had). He is off to secondary next year. Still needing support with his work etc - he has learning difficulties but is progressing well.

My DS was diagnosed at 2, and as a toddler and young child he had a very difficult time. He is now 12 and is a happy boy. He is non-verbal but has excellent language, he communicates by text-to-speech on a phone. He had all of: self-harming (head banging), tantrums and meltdowns, sensory issues, stimming and fixations, flapping, toe walking and many other behaviour issues. He now has none of them. I remember his behaviour consultant telling me when he was about 4 that he was a person who would find being grown up easier than being a child and I think he is being proven correct.

I have ASD though wasn’t diagnosed until adulthood. I was an “odd” child- incredibly echolalic at home and never stopped talking, completely mute outside the home. Lots of handflapping and tip toe walking and spinning around (sensory thing).

I’m now 30, I have a degree, career in investment banking (though it took a few years to find the right employer who supported my needs) and am getting married next year to an incredible NT man who supports all my needs. I still struggle to cross a road alone, I now speak outside of the home to facilitate the job etc but when we get home I verbally tic like mad at my partner, who has learnt to use these to communicate back to me!!!

I carefully manage my life to not get overtired or overstimulated- spacing out social events and planned rests after busy times at work etc. I have reasonable adjustments in the workplace.

Look up the “spikey profile” associated with autism- the exceptional strengths but also rock bottom lows sometimes help me explain my needs. I.e. the other day I went out for lunch with colleagues and had to ask a colleague to help me across a road and then to order my meal for me. I think went back to the office and did some complex data analysis in about half the time it took anyone else!

The biggest thing I have learnt is actually that I can still learn. Just because things like social cues aren’t innate to me, doesn’t mean I can’t learn strategies to cope with this, it may just take me longer.

Oh and when I find clothes that I like… I buy multiples of them. When I found the first pair of skinny jeans I could tolerate, I bought 5 pairs, I have 10 of the same tops for work, just in different colours, etc!

Thank you so much for this thread, OP. I really needed it today.

Op your child is who they are ,my child has severe autism and learning disabilities ,and is non verbal and goes to a special school ,I clung to all the insperational cases of of people with autism when he was three ,the fact is it's a huge spectrum,I now focus on the amazing lovable cheeky child I do have who makes us laugh everyday with his antics .

I don’t have any experiences to share but just wanted to say you sound like such a lovely mum. With your patience, understanding and support I’m sure your gorgeous little boy will reach his full potential in his own time xx

So, I would LOVE to hear your ASD progression stories to cheer me up a bit :)

I don't really want to piss on your chips bit it's important not to glamourise disabilities. There is no such animal as an 'autism progression story'

Kids change, ALL kids change, and they grow and develop and while an autistic child will progress in some areas they will always face challenges. There is no pot of gold at the end of a rainbow here.

A lot of posters will say 'oh my kid is (example age between 8 &11) and doing fine now' - that's not a progression story that's just where they are now and they still have lots to face.

I know it sounds really negative but it's just how it is. I'm in my 40s and I'm still l as autism as I ever was, it just presents and (more importantly) is managed in different ways.

One of my DC was a night Meade through primary school, couldn't be left alone during high school but is now at university (but living at home) and thriving. He is highly academic but he isn't any less autistic than the child he was in primary school who could barely get thorough the day.

That said, has your child even been diagnosed?