To ask how your ASD child had developed?

[Thehonestbadger]

I have a almost 3yo
Non verbal, just beginning to have an occasional word but lots of babbling.
He started talking normally then suddenly stopped altogether around 14/16mo

He does respond to some commands like ‘stop’ or ‘no’ if I really shout them and will now sometimes hand me items he’s holding if I ask for them or look at an item if I point to it.
He’s not reliable though and he doesn’t have great awareness of others needs (he will kick a hot coffee right out of my hand on the sofa or try and climb me whilst I’m holding his baby sister and hurt her).

He goes to nursery, he manages ok but doesn’t do the group activities and Isn’t interested in the other kids.

He doesn’t point or nod/shake his head, he doesn’t acknowledge anyone arriving/leaving or engage in tasks (like food shopping or chores even when made a game). He can’t follow simple instructions like ‘get your shoes’ he just doesn’t have a clue, I might as well be speaking mandarin.

If you have an ASD child also I would be so grateful to know how they developed as they grew. There’s no template and I know that, they’re all unique but I’d love to hear what life with older ASD kids is like so I can brace myself. I feel like I’m staring into the complete unknown.

My 18mo is neurotypical and I feel like I have such a better idea of what her future will look like.

Hi,

Just to begin (before anyone jumps on this post!) I appreciate that every child with ASD is completely unique and for every piece of advice I post someone, somewhere will have the exact opposite experience with their child. However I think it helps to share insight into our own experiences.

My son struggled with starting school - despite the fact he went to the school nursery from age 3 and transitioned alongside his friends. His class teacher reported that he didn't freely participate in class and "watched" his peers play during breaks - unsure of what to do with himself. He struggled with forming some sounds and was subsequently referred to speech therapy by school (aged 5). Speech therapist was amazing and he was signed off after 2 months of input (during school time) - did some homework with me at home too from speech therapist. This improved his confidence tremendously and teacher commented that he put his hand up to answer questions. I also noticed that he developed confidence and started speaking to staff in shops/restaurants when previously he would shy away from them and expect me to talk for him. Speech is no longer an issue - he is a chatterbox!

Speech therapist recommended an ASD diagnostic test which he did and was subsequently diagnosed. His score was extremely high (not borderline).

I found that when his body hit a testosterone spike (aged 7) he because an aggressive nightmare. Lashed out at me violently. I was close to a breakdown. For example - the looks I got carrying him out of a family restaurant as he had a full scale meltdown and just had to be removed from the situation. He was clearly not a toddler and I felt so judged! Ended up getting a child psychologist involved which was incredibly expensive (£300 per session) but if I could go back in time I'd do it again as he completely changed as a result of her input.

Psychologist helped me identify his "triggers". For example - birthday parties or "special event days" at school. She recommended I give him a "get out clause". He would get extremely anxious before parties (as not sure what to expect) so I'd say "Well you have been invited and accepted the invitation so lets just go along, pass on the gift and if you are not happy we can leave". This worked AMAZINGLY well. It just completely dialled down his anxiety around it all. He NEVER left a party - was always happy when there - but the build up was intense!

Another trigger is hunger - so I ALWAYS carry around some snacks and am careful about meal timings. Extreme hunger = meltdown. Once he gets there he will refuse to eat - meltdown spirals. So I make sure we don't get there!

Anyways - fast forward to present day. He is in his final year of primary school. Top set for every subject. Working beyond expected level in numeracy and literacy. Had parents night a few weeks ago and he was described as, "extremely popular" which made me so happy! He is in a solid core friendship group that he has maintained since nursery but also plays with everyone else in his class. He is football mad - part of a league team with a solid group of friends different to his school friends.

He is a friendly, outgoing extremely bright boy however I do worry about his transition to high school. Despite his diagnosis he receives no additional support at school as he doesn't require it. I am however sending him to a high school with an ASD unit just in case it becomes an issue at high school.

There are times when I feel bad for wishing he didn't have ASD. For example the Christmas he threw a carefully chosen gift to the side after opening it as he "didn't order that from Santa" however I just have to accept that is how he is!

I've also come to realise over the years that he has undoubtably inherited his ASD from me. Reading his diagnosis report was like reading a report about me as a child in many ways. I won't lie - I do feel guilty for that.

If you have any questions please let me know. I understand how difficult it can be.

My (autistic) son isn't much older than yours - he was 4 in the summer - but is so much different compared to just a year ago. He was referred for assessment by his preschool for behaviour similar to how your son is at nursery, but is happy and sociable at school and doing much better than I thought he would!

As you said, every child is different, but remember, your son isn't even 3 yet; so much behaviour I attribute to my son being autistic, he seems to have grown out of!

Mine are complete opposites.

The older one finally settled in high school after struggling through primary and now goes to uni (lives at home). The younger one sailed through primary and I had to take out of high school after 2 terms. We now home ed.

I don't mean to piss on your chips but your child will always be autistic. You won't get an idea of your their future by hearing other people's experiences. I struggled my way through and had a breakdown when I was in my early 40s.

All children change as they grow and your child will find different things easier/harder as they develop.

I'm sorry but I really feel these 'tell me about your wonderful autistic child' are misleading. Parents telling you how their child is amazing when they are 8 or similar often forget their child won't always be 8 and things won't always be the same.

My autistic child has always been verbal but he struggled badly with transitions, sensory overwhelm and regulating his emotions.
He understands himself now, is self reflective and removes himself from situations before he melts down half the time.
The way he describes what is happening in his body and brain is incredibly insightful. I hope he is able to find environments that work for him in the future.
He needs support in school but academically is doing well. I hope for him to go to a secondary school with a unit. There is every chance he will be able to study for a degree but I think he’ll probably live at home.
The changes are gradual but at three he had been excluded from a nursery and was sad a lot. Now he is a happy child.

I agree with what you’ve said but I do think as we learn about our child better and as they learn about themselves they can navigate the world in a happier way, eventually advocating for themselves for environments that help and don’t hinder.

My DS is almost 5 and going through the assessment process - which feels like a formality at this stage as it’s so flipping obvious and we have so much evidence from so many professionals!

I find that DS has huge development leaps in a short space of time (it’s possible my oldest did this two but I was less focused on her development stages as she was always where she should be). He went from unable to talk to speaking sentences in about six months aged 2.5ish. Academically he’s always been good at letters and numbers but his phonics and numeracy have just gone from strength to strength in the last couple of months, both his teachers and I have noticed it.

I went to a brilliant training session recently where the lady reiterated “if you’ve met one person with autism, then you’ve met one person with autism” quite a bit. She told us one story about a child who didn’t talk until he was 7, but eventually did - I know that gave a lot of hope to a friend I was with. It’s so hard to predict a trajectory, but I fully understand wanting to!! If it helps at all, this time last year DS was like a different child, he has changed SO much in that time (in an amazing way!).

DD can't advocate for herself. She is selective mute, something which didn't develop until she was around 10.

I remember looking for positive experiences when my 6 year old was diagnosed at 3 because the whole thing felt so unknown and frankly, scary. I am a planner and not being able to see into the future was awful. Of course, realistically none of us know what will happen even with NT kids.
My boy at 3 had very little language, he was uninterested in other children and his meltdowns were frequent. However his language really came on suddenly and now he is a total chatterbox. When he could communicate more, his meltdowns decreased. We had an EHCP in place whilst still on nursery. He started mainstream school with a 1-1 but the environment was completely wrong for him so this year, in year 2, moved to a SEN school and it's been the making if him. He now has little friends for the first time because the school is right for him and he is himself. I can finally breath because he is happy.
I look for SEN sessions everywhere so he can get as many experiences as possible and took a course in understanding autism so I knew what I was talking about in meetings etc.
Life is very different than 3 years ago, it's not all plain sailing, but he's a happy boy and we've found our rhythm. Best of luck to you x

@coldec

I have no issue with him being autistic or delusions that one day he won’t be.

i love him, it’s hard but I love him.

I didn’t post this just to hear the good I’m happy to hear the bad too… tbh I’m happy to hear anything. There are loads of neurotypical kids around it’s easy to compare but I don’t know any other ASD kids IRL (despite making efforts to meet them and going to events…etc - literally I went to one recently and was the only one who showed up)

I just want others experiences.

Ive just read all these responses and it’s made my night. I’m lonely tbh and feel a bit on the outs with my ASD son IRL
I hope we will make more friends in the ASD community as he gets a bit older

I'm sorry if I worded it clumsily I didn't mean to make it sound like I was having a go. I'm just not good at putting things in words at all.

My DS is autistic, with pathological demand avoidance, and ADHD. We home educate him as we believe the stress of him being in a school environment made him unacceptably distressed - the noise, the rushing, the timetables, the heat, the uniform, the other children. He referred to preschool as the place he had to rescue himself from - he did that by intentionally behaving in a way that triggered them to call me to collect him within minutes of us arriving. He lost 20% of his body weight in a three month period, with huge sleep regression before we left. Ed psych was in contact and advised we had done entirely the right thing - DS had a very spiky profile with huge ability in some areas and deficits in others and even at preschool with big behavioural issues, was working at several years above his age group.

He is 12 now and we've seen huge improvements. There are things which he just cannot do, and tolerate. He has an actual, loving friendship with his sister which gives me hope for him being able to form the same outside the family circle when he's able. He hadn't been able until now - a motto for us had been that he'll get there in his own time and we've found this to be so true. His speech is becoming more distinct and things which we dreaded - like braces - were accommodated much less stress than we initially feared (this is the 5yo who couldn't - simply couldn't - tolerate brushing his teeth and yes, the community dentist was aware and supported us - it was an actual real problem, not just we couldn't be arsed to make him)

He is keen to learn but in his own terms. We found door displays to be a great thing for him to take info in when he was open to it, not when I suddenly decided he should be taught something. Many things have come much later than his younger sister - someone once said that autistic children can be about 2 thirds of their chronological age and we've found that to be fairly true in terms of social ability. However, one thing we found to be really important is to discuss things - being autistic, our expectations, what he doesn't enjoy - with him clearly, and up front.

He went through a phase of not wanting to go out and that lasted for a few years. But now, he likes to go out several times a day. He ate the same thing for dinner for years, but now he's keen to try new foods. He was allowed to cook, and not eat what he cooked, choose things but change his mind. He eventually decided to eat foods which seemed impossible during the egg noodle years. He ate Magnums religiously every day for 14 months but now hasn't touched any junk food for more than a year. He got there in the end, and perhaps would have resisted more had I pushed more.

I suppose I'm trying to say that my experience of my autistic kid is that support, and acceptance has made our journey much much smoother. Follow Autistic led Facebook pages like Spectrumy for insight. I'm also aware this account is coloured very much by his demand avoidance, which is triggered and exacerbated by anxiety and (obviously) requests. There have been plenty of occasions when I've had to rethink exactly what I need to make important. Every time I say 'but he has to...' I step back and rethink that...

Are there any local groups run by parents of Autistic children on Facebook or real life? In our area there is a local charity which run a play group on a sat morning every other week where the kids play with a key worker and I get to chat to other parents who are experiencing similar things. I found that being able to read about other experiences on line and chat and laugh in person has been a godsend.

@Thehonestbadger it will be tricky to navigate however I believe it gets easier as you and your child figure things out.

Something that I found seriously annoying was other peoples inability to understand what it's like to have a child with autism. Some people fail to perceive that something simple/straightforward to other children is not so for those with ASD. For example - the school have a sweater which is part of the uniform and my son refuses to wear it - it freaks him out as the elastic waist makes him feel restricted. My mum tried to INSIST he wore it to be "just like the other kids" however he's not just like them and as far as I'm concerned not wearing the sweater (but simply the school shirt and tie on its own) is perfectly acceptable. The school have no issue with this.

We have 1 with ASD who went to a specialist ASD preschool. DS was verbal but it was delayed. Of his friends who weren't verbal and didn't attempt to communicate other ways by 3 all ended up needing significant care and aren't expected to be independent. Some were nonverbal but clearly understood quite a bit and a fair of them are what might be called 'high functioning Autistic'.

My son was diagnosed at two and a half, he had very challenging behaviour so much so on the front of his notes in capital letters it said "Duck, he has an incredible aim and won't miss your head" He almost maimed the SALT as he threw a bedside table down the stairs at her because he hated anyone intruding in his space. He didn't speak but I learned he could read before he was three when he used magnetic letters to spell Oracle (teletext service at the time) He wanted the subtitles on the TV and suspect that is how he learned to read.
He could recognise and call out numbers at three and a half and he'd use certain numbers to get his wants met so he'd shout "Two!" which meant he wanted a biscuit and "Seven!" which meant he wanted the door opening. Trouble was the numbers changed depending on which number was in favour that week.
By five and a half he had phrases interspersed with jargon. The phrases generally came from tv or books and were largely appropriate or close enough to be able to guess what he was wanting to say. I do remember an elderly lady with a doddery dog look confused when he said earnestly "Not all dogs to heaven you know"
By seven he had an approximation of normal speech.
He's an adult now, he can speak, but each day we have the same scripts prompted by what is happening at the time. He doesn't speak outside those scripts. He will speak football or Grand Prix statistics to his Dad or his brother but not to me or his sisters. If he needs or wants something he either emails, texts or leaves a note because he finds it easier that way.
He's a quiet and calm young man and there is none on the challenging behaviour there was when he was younger.

Something that I found seriously annoying was other peoples inability to understand what it's like to have a child with autism. Some people fail to perceive that something simple/straightforward to other children is not so for those with ASD. For example - the school have a sweater which is part of the uniform and my son refuses to wear it - it freaks him out as the elastic waist makes him feel restricted. My mum tried to INSIST he wore it to be "just like the other kids"

I can relate.

I remember trying to explain to a friend I couldn't make firm plans for X day to meet for lunch because DH was at work and I didn't know if DD would be in school as she had been refusing due to her anxiety. Friend said 'it wouldn't be mine, I would just tell her she was going in!'

It's infuriating!

Don't get me started on the "ASD isn't actually a thing as they didn't have it in my day" mob. Or, worse still, those that advocate that it doesn't actually exist and is just a fallout of poor parenting.

My son is nearly 4 and still in the situation you outline on your post. I know lots of autistic kids as we have good groups locally, they are all completely different it's absolutely impossible to predict

Yes the lack of understanding from others is difficult. Everyone knows I live with adult son and adult daughter both autistic but there is little understanding that I cannot simply get up and go out for any length of time without making arrangements for them first. No they wouldn't burn the house down or let anybody in but they would be overwhelmed with anxiety, they wouldn't eat and it would take days or even a week for the anxiety to become bearable again but because they look "fine" it's assumed they are "fine"

There was actually nothing remarkable about my ASD children. They talked, walked, met milestones early, didn't regress. One would be called quiet. The only thing that stood out is that they always needed to be held and carried as babies. They were maybe a little more full on. Probably why they weren't diagnosed until teens.

DD2 is going through many different specialists at the moment to get something nailed down before she begins primary in just under 2 years, but I’ll tell you what’s happened so far 😊

We’re actually very fortunate, I flagged things that I noticed at her 2 year check and the HV was newly signed off and took everything I said as she was given it. We had home assessments and they then referred to paediatrics, SALT, Portage, podiatry and physio.

We’ve been to portage for a few months and they’re lovely with her but haven’t been able to do much in terms of her development except witness what she can and cannot do. We’ve had her initial SALT and paediatrics appointment and they both agree she likely has ASD and SPD but they will continue to assess after SALT has started.
DD2 is mostly non-verbal though will babble and has a lot of repeated speech she’s picked up from others or from her favourite TV programme. Up until the last few week she didn’t point at all and never followed where I pointed to either, Makaton has really helped with this I’ve found as she’s starting to use her hands a bit more.
She simply cannot hear us when we call her, we’ve been advised to break her concentration and place our hand on her arm in order to get her concentration and then say her name, this has worked a lot more.
We say ‘help’ when she pulls at us and she now repeats ‘help’ when she wants us to do something. She can’t verbalise what she wants and we used to show her her choices but we’ve been advised to keep it to simple one choice at a time and say what each thing is, she’ll then shake her head or grab the item if she wants it.

She is massive on sensory seeking, she will put anything and everything in her mouth. It’s actually terrifying at times, chewllery is discarded in favour plugs/concrete/any old bit of crap on the floor, the paediatrician think she has Pica. She is also a massive eater of regular food (one of the few things we never have to worry about) though she will eat and eat and eat so we have to really monitor and limit her intake.
She loves to swing, be swung, throw herself around, rip things up, smash things, spit, splash in water and give big squeeze hugs. Anything where she gets feedback really! It makes her happy and I do love the hugs.
She walks on her tiptoes most of the time, the podiatrist said it’s sensory related but she needs to be assessed as her legs muscles are becoming shorter because of it.
She lives to make noise but doesn’t like them, she has ear defenders in lots of different colours and she likes to pick which ones she wants when we go to places like shopping centres or anywhere with noise.

She has no fear and will run into traffic, this hasn’t changed sadly. She wanted to get out of her bike the other day and I thought ah why not. Nope. Wouldn’t hold my hand, put on her backpack reins or walk next to me, she just shot off on a busy main road with not even glance back. It terrified me to be honest! We have to take her in the pram everywhere, we’re going to need a new one soon as she’s getting towards the weight limit.

She likes routine, however she adjust well after a little while. She has become more flexible over time which I was told wouldn’t happen however I’m still her go-to person if anything goes wrong or she is overwhelmed.

When we don’t understand her, she’s overwhelmed or she doesn’t understand why she needs to wait for something she will throw herself on the floor or try to hurt herself. Luckily these moments don’t tend to last very long, 5-10 minutes max unless she’s tired, so I make where she is as safe as possible and sit with her and wait until she’s calmer and wants to cuddle which she always does.

When I compare her to her sister (I know, I know you should t do that!) I’d say she’s developmentally about where her sister was at 2, however she’s happy, she finds joy in small things and she’s honestly the loveliest little girl. Life is HARD at times, I can’t take my eye off her for a second anywhere I am and if we go to somebody’s house I follow her around whilst she tries to break everything. Nursery have her 1-2-1 most of the time when she is there and they’re amazing and she loves them.
I found accepting that she will likely have an ASD diagnosis and finding ways to adjust her environment to make life easier for her (and in turn all of us!) has been the key to her developing happily and at her own pace.

I’m so sorry this is so long, I honestly didn’t realise until I just scrolled back up. And I’m probably missing lots of things too 😂

Both my DD’s were diagnosed before their 4th birthdays. Dd1 diagnosed with Aspergers, she didn’t have the issues with speech, if anything her speech was years ahead (she scored age 16+ on her speech assessment at age 4). She has struggled with anxiety, was bullied through primary and high school. She’s now 18 and is at uni and doing great. Her sister was non verbal until she was 5, went to SEN nursery and SEN high school (Main Stream primary). Her communication issues have improved slightly but not much, she struggles to let us know if she needs help or if she’s sad/angry etc.., her sensory issues are pretty extreme, I have to lock things away from her at home especially food and money or she just takes them. For dd2 I think her issues have got harder, it was easier for me to make excuses when she was tiny but now she’s almost an adult and I struggle to take her anywhere alone. She’s almost 17 and will never live independently, we have just started the process to look for somewhere for her to live when she turns 18.

so yes, each child is different, for one of my DD’s things have improved gravely whilst the other no so much.

Mine is 8 now.

She never responded to her name, never babbled. Made this repetitive click noise with her mouth. No joint attention. Very sensory. Very repetitive in her behaviours.

Those were her 12m-36m signs. She was diagnosed at 5

I have one diagnosed autistic child, and one not. But I partly posted to say that at 18m I’d have bet my house my youngest was NT. They met all their milestones, were easy, very bright, chatty, physically and emotionally capable, enjoyed people, loved nursery - absolute opposite of oldest child. They are still all those things. And yet, as they get older and peers become more socially sophisticated I see a lot of traits in them that weren’t apparent then. Nothing particularly disabling or that I’m rushing to get assessed (yet), but I’d no longer be surprised if they were neurodivergent in some way or other. Obviously you know your children, but I would just very gently suggest keeping an open mind, nobody knows how their child’s life will pan out, NT or otherwise.

My autistic child was a very very hard toddler and preschooler - impossible to take anywhere without a meltdown, didn’t cope at nursery, wouldn’t toilet train, aggressive to other kids, very anxious, very picky eater, terrible sleeper, wouldn’t be separated from me, slow to talk, obsessive about things and generally drove me to tears daily.

He’s still anxious, he still only eats about five foods, his behaviour at school can still be very challenging and he still drives me to tears on a regular basis. He is much harder work to parent than his sister and he needs a lot more emotional support and parental input than his peers. But he’s also, mostly, thriving - he’s in mainstream school, he’s popular and got a bunch of very good friends (and he is a good friend to them too), he’s funny, he’s kind, he’s thoughtful, we go places and he enjoys it, he copes with things so so much better than I ever dreamed he would at two or three and academically he’s flying. He’s still very emotionally volatile but he’s getting better at using words, knowing his own triggers and knowing how to calm himself down when he’s upset. He’s a lovely child and I couldn’t be prouder of him or enjoy him more. I am very aware that could all change with puberty or secondary school, but we take it one day at a time.

Can I really encourage you to find some other parents of autistic children in real life - it has been one of the most encouraging things, to be in a room with people who “get it”.

Same with my ASD quiet dd.

Funny you say they always needed to be held and carried as babies. I could not put both both of mine down when they were babies. They needed to be in constant motion. Dd was diagnosed in her late teens. Ds is 16 and as far as I know neurotypical.