Can I ask how your adult /teenagers are with asd, and how they were as kids?

[Takiwatanga]

My son has been diagnosed with asd since 2. I would say it was a mix of us being very pro- active to get a diagnosis and subsequent support, and the fact he is quite challenging and presented as rather severe at the time.

A couple of years in and he is doing well. Some would describe him as high - functioning, others don't . I would say he is moderately impacted by his autism and sits somewhere in the middle of the spectrum. What I have come to realise though is despite his growth and progress, he still has so many difficulties and actually regardless of where he sits on the spectrum it's no indication of how his life will be as an adult or teenager.

I'm just eager to her how those of you with older DC / adults are doing? Honesty is fine. I can handle it. 😊

Following with interest OP.

My DS is 4 1/2 and was diagnosed just before his 4th birthday. It’s really hard to say how severely he’s affected yet. He is verbal and communicative, he is developing all the time and has made so much progress in the last 14 months since I first took him to a SALT drop in clinic but developmentally he is behind his peers. He will be starting at a ms school with full time support in September.

It’s so hard to imagine how he’s going to be as a teenager and how independent he’ll be. If only we had a magic ball to take away the worry.

Open, your son sounds like mine. He has come on massively and we hope for mainstream school, but with full time support. He has a 1 on 1 and an ehcp already for his nursery he is starting in September.

How old is he now Taki? My ds only had 1:1 support for the last few months of nursery but it helped him tremendously, especially how he interacted socially with the other children. I’m hoping the summer break won’t set him back too much.

I would say he is moderately impacted by his autism and sits somewhere in the middle of the spectrum
I think you've got the old fashioned idea of the spectrum as a linear scale, which could colour your expectations.
Most people prefer to think of it like this these days the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

As the parent of a now adult dd with ASC and a host of co-morbids and some other conditions, I'd say behaviourally she's nothing like she was as a child.
She still reacts to triggers, I think she always will, but the difference is now for example she can understand that a loud noise makes her want to run in the opposite direction, but instead of running, she can now calmly move away or choose to stay and use ear-defenders.
Emotionally, she was years behind her peers in childhood and teens, not so much now.

I won't go into details because girls present so much differently to boys. What I will say is nothing stays the same, always be aware of the spiky profile, just because they can do A and B it does not automatically mean they can also do C.

I've been absolutely astounded and delighted when she's done something I never thought she'd be able to and I've had to learn that when she doesn't understand something it's probably because I've not explained it in a way she can understand.

There are always challenges, but they change over time.

Every child with autism is different, no-one can tell you what your child's journey to adulthood will entail, try to find something good in every day. Don't expect parents of only NT kids to have a clue and learn to ignore all the ignorant comments about parenting etc.
These SN boards on MN are the most helpful and understanding that I've found online, just knowing someone understands how you feel is so welcome when it's been one of those days

Blank times - thank you so much for that link. I particularly found the wee illustrations helpful! I am aware it's no a linear spectrum but I guess when I say moderately autistic I mean he's impacted moderately, but then the illustration of the circle blows all that outbod the water and actually explains my son better! So I'll keep trying to remember this. I do think thiygh that in some instances a child can be very impacted in every area and some kids can be barely impacted by their autism and in these cases it would be hard to say theyre both the same? If you know what I mean.

My eldest is 17. Hes a great lad. He was quite challenging as a young child. Many meltdowns. He has quite a few issues really. He was in a sen school for a lot of secondary which i think was really beneficial as it was holistic rather than academic iyswim. Hes now about to start a performing arts course at college and hes funny, clever, political, interesting. Hes fab.
Cant imagine him holding down a job anytime soon and his executive function is terrible so cant imagine him living independently any time soon either but hes surprised us so many times its not out of the question, especially if it was supported living. He has even had a few online girlfriends

Bran, thank you for sharing that with me. He sounds like he's doing really well, very uplifting to read.

Ds2 has taken 8 Gsces, and the first he took last year he recieved a high B for, in a humanities. He is dyslexic and has terrible executive function but like Branleuse's ds funny clever political interesting. He never gets into rages or meltdowns, occasionally talks slightly too loudly or refuses point blank to do things in a "fixed" way, has special interests (in his case his local football team to watch not to play)
As a little boy he was clever, talkative but displayed all sorts of sensory issues and got very upset between 9 and 13 on all sorts of issues, and found it difficult making friends/joining into groups. Now he seems very integrated, still gets occasionally anxious but can relate to others and is sensitive to social "norms" whatever that means!! Mainstream but home educated for two years in early teens. Secondary school was very difficult at first, now with an EHCP it is fine, he is well supported, and scribed for exams. We just went to a play at NT last night, and he is asking to book the Proms. A great companion.

There is a child in ds's class at school who attended a special school at primary for what might be considered "severe" autism in terms of behaviour and reactions, although high IQ/speech, now is fitting into secondary brilliantly too due to early support, and has a group of friends. At 8 I would have thought him very challenged, couldn't cope with group activities at all, in a way that ds could just about, but now he is fun to be with, and he is showing a big smile on the Prom photo with a large group of his own friends. Planning to do A levels. Children with diagnosis can develop positively (in the sense that you wouldn't have thought they were going to manage x y z) in so many different ways. I would say that those without a diagnosis can be the ones who suffer more in the long term.

DS is 18 and was fully diagnosed with "high functioning ASD" aged 7, although marked as showing characteristics from the age of 3.

As a younger child he used to have massive melt-downs and self harm (hitting his head against walls), he rocked, had a very odd walking style, flapped quite a lot and used to get very obsessive about things. He had significant sensory issues too, particularly about smells and sounds. His idea of absolute hell was a busy shopping centre. He was and is very stressy.

He is bright, but has multiple additional learning needs, including severe dyslexia. He went to a school which specialises in teaching boys with additional needs and managed to get 10 GCSEs and we're waiting to hear how he did in his A levels.

He struggles most with peer interaction and that he gets incredibly stressed very quickly. He was challenging to teach, as he veered from being a know it all, to utterly incapable - in his own opinion of course!!!! This meant he either thought he knew more than his teachers, or he was so stupid he could not be taught.

If you met him for the first time for a brief chat or even an interview, you wouldn't know. He can force himself to make adequate eye contact, knows that he has to take turns in a conversation and has had good manners drilled into him by his mother. However, if you met him a second time for more than 10 mins, you'd know he was a bit different.

As he has got older, he has learnt to manage a lot of the sensory stuff better and is slightly more self-aware, although is still utterly incapable of telling me how he feels! He is quirky and different and has the potential to get himself into pickles (as he is unable to mind his own business) but generally copes ok. He has a summer job and is hoping to go to uni.

DS didn’t speak til he was 4 and struggled massively in primary both socially and educationally - he scraped SATS with lots of help.

He enjoyed secondary but left with no GCSEs despite being predicted to do well and being a hard worker. His anxieties got in the way and his abilities have always been more practical than academic.

He’s a grafter so resat his English and Maths several times and got them in the end.

He’s doing an apprenticeship in an engineering area and flying technically which is unsurprising as he was the typical geeky kid taking apart computers and fixing stuff at 8yo.

The areas that he struggles in with his job are those that involve emotional interaction. He has been “taught” social pleasantries by me from a young age so can fake small talk briefly enough to pass for “normal” but if something angers /frustrates / scares him (of which there are lots of things) then his reaction is off the scale, and he cannot recognise this.

People tell me what a nice pleasant lad he is and my friends are envious of how helpful and kind he is - he has his moody / sulky moments too though.

He won’t walk anywhere on his own and won’t use public transport so until he passed his driving test it massively limited him.

He seems to have inbuilt sat nav which helps him find his way round but if he broke down / something went wrong then he would need someone to help him to help himself iyswim- eg he can change a wheel but would need someone with him to stand next to him to make him feel safe / has the knowledge to jump start a car but would need someone else to ask a stranger if they could use their car to jump start his.

He doesn’t like busy noisy places (despite playing really loud music himself!) so doesn’t go clubbing which frankly is a relief to me. He’d rather go for a quiet pint with a mate. He has a few close friends and doesn’t like being out of control so doesn’t do drugs - he has no filter so keeps no secrets from me so I know he’s not lying as he can’t edit stuff to sift out stuff his friends do that I might not approve of.

I’m putting in structure to give him financial independence- he has a bank account in his name etc but if he needs to sort anything then I have to write emails / letters for him to sign or sit with him on the phone so he asks them to talk to me.

Will he live independently? I’d like to think so, but he will always be vulnerable to someone abusing him.

Dd(17) has high functioning autism, ADHD and GAD. There were no issues pre school or at primary school apart from her being highly strung and easily made anxious. She did not cope at all at secondary school and developed mental health issues (Self harm, anorexia, suicidal thoughts, overdoses) leading to assessment and diagnosis. She was out of school for 2 years bud did get 7 GCSEs mostly at high grades - she is very bright but only works at what she enjoys! She is returning to school to start A Levels in September and plans to go to university. Long term, she hopes to get a job, a relationship, her own home and family. I am fairly confident she will live independently - as she has matured she has learnt to understand herself much better. I do struggle to imagine her with a partner and family - she sees from her viewpoint and I am not sure she would be able to constantly take account of other people’s needs. Time will tell.....

Thank you so much for all the responses. Will have a good read through now and respond. Been manic here, as you can imagine, sorry for the late reply x

When my son with autism was 3, he had virtually no language, no social skills, exhibited bizarre behaviour and regularly had meltdowns.

When he went to school at 5, he still had poor language skills, no social skills and had no idea how to behave. He regularly lay down in assembly, refused to co operate in class and used to hit the staff and other children.

He was not diagnosed with autism until he was nearly 8. By this time the hitting and lying down in assembly had stopped, and he was conforming more at school, but we noticed his behaviour at home was much worse . It was as though he was only just managing to hold it together for the time he was at school and then all hell let loose when he got home.

I now realise it was because he wasn't getting the right level of support at school.It didn't help that at that time his regular teacher was seriously ill, so the class was having one supply teacher after another - as you probably already know, children with autism need routine and stability and to know what's going to happen in advance.

By the time he was 11, our son bore no resemblance to the little boy he had been when he first started school, although he still struggled with language, was emotionally immature and still needed a lot of support at school.

He went to a fabulous secondary school where they put in virtually 1:1 support and he settled really well in a very short space of time. Although he still found things difficult at school he did really well and all the behaviour problems we had up to then stopped. I believe this was because he was given the right support at school, by people who understood autism, and were experienced in this field.

As the years have gone by, we have met many challenges, but our son has continued to develop in his own pace. Mainstream FE was a disaster as the staff had no clue about autism and just expected him to fit in with everyone else. Not surprisingly the placement fell down and our son was diagnosed with an anxiety disorder 3 years ago.

He is now 23 and in a specialist college for students with autism, where the staff are absolutely fabulous, and where he is making fantastic progress, doing things I would never have thought would have been possible a few years ago. He has learnt to cook, he travels home on the train by himself, and is doing work experience dealing with the public. His confidence has improved and his self assurance is becoming more apparent as time goes on.

He still struggles to understand complex language, still has difficulties in social situations and will probably never live fully independently, but he continues to surprise us, so who knows?

I should probably tell you though, that our son only got the help and support and the specialist college he needs, after ongoing battles with the local authority, which entailed involving solicitors and the local councillor, a judicial review, 3 appeals to the SEND tribunal and several official complaints, including one that was referred to, and was upheld by the Local Government Ombudsman.

It has also involved a huge amount of stress, an avalanche of paperwork and putting my life on hold during the process, including giving up part time work. It hasn't been easy, and it shouldn't have been necessary, but it has been so, so worth it.

Ellis, thank you so much. Your da sounds amazing, as do you.

@Nettleskeins I just wanted to say I really liked this comment of yours:

“A great companion.”

I have been having a bit of a down day today about my DS aged 5, who I think will need to live with us forever. I was thinking negatively about that until I saw your comment, then realised I had been looking at it in the wrong way.

Your DS sounds lovely.

Same, Miss Banner ❤️

I like that this thread has been resurrected... Enjoyed reading through all the comments again.

My son is almost 20. He’s always been at the severe end of the spectrum. He has SLD and is mostly non verbal. As a child he was very easy, hardly knew we had him. At 14 his behaviour got worse, he developed epilepsy and OCD. He has meds now that help somewhat. He finished school in July at the end of year 14 and we in the process of a tribunal so he can attend a residential college. The LA propose to cease his EHCP but he needs these last 3 years of education which is why we’re fighting. He has a lovely nature but interspersed with aggressive behaviour x

My son was originally diagnosed with speech and developmental delays. I advocated for him from the start of his going to preschool (where he had a very mixed experience but the staff worked well with him with the limited resources they had). I was also subsequently advised he has autistic traits. He received a statement in Y1 and that followed him throughout his school life till finishing school with a few GCSEs. His statement was removed upon starting college and that place was a nightmare. His second year was not great either but he passed his course with distinctions and received an award at his graduation ceremony.

He now works full time, works on different job sites without complaint and does a daily commute by train. He still struggles with the social side of things and though he is more confident now that is still an ongoing process. I continue advocating for him as and when it is needed.

Thank you so much for sharing all of this guys.

My DS2 is 21 now. At special school from age 4, autism, speech and learning difficulties, but always a passive gentle chap. Went to special needs college and then a Mencap traineeship, and now has a job!.. he works part time (but nearer full at this time of year) in Asda, where he is a fabulous employee, as e is always on time, never sick, does the job exactly as he is trained to do.

He still needs lots of support with every day living skills , still eats inedible objects, and is medicated for anxiety and OCD but compared to the non verbal flapping little boy he was, he has sailed past everyones predictions. He won't be independent, won't drive or marry (no interest in relationships, just in lists, supermarkets and pets) but he has a happy life with us, and one good friend (also with disabilities) and he is a huge favourite with customers :)

Thank you for this thread, OP and thank you to those who have shared their experiences and knowledge.

My DS (2) has just received an ASD diagnosis so I'm watching this with great interest at a very uncertain time.