To want to know what the future looks like for my autistic child?

[Olivere]

My lovely son age 3 has been diagnosed with ASD.

When I asked where they felt he was on the spectrum I was told that they no longer answer that. They categorize all new diagnoses as Autism spectrum disorder and no longer indicate where that child is on the spectrum, whereas they used to, and still do in the USA and other places.

I feel it would benefit me to know what our future might look like because everything seems so uncertain and confusing.

He has some speech but it is very limited to asking for what he wants, IE "juice, dinner, dummy, chocolate". There is no back and forth communicating. He scripts. Head bangs. Has alot of sensory processing issues and struggles alot day to day with aggressive meltdowns.

I'm in several support groups and so many of the other parents there have had diagnoses such as Aspergers, level 1 autism, level 2, mild autism, severe etc.

Is there any way for me to identify or ascertain where my little boy is on the spectrum or do I just have to wait and see?

It makes me sad and frustrated that other parents were given answers to these questions and therefore have something of an insight into how things might look for them moving forward, but I don't have that.

I feel lost.

AIBU to want these answers?

And avoid consequences or star charts for bad or good behaviours.
They don't work with most kids and especially not those with autism.

Try "the first we do this then we do that "way of communicating. "First we put on our boots then we go to the playground" approach. Short and sweet. Not ,"if you don't put on your boots we cannot go to playground" which is confusing

@Olivere I find this a useful website for explaining to parents why we don’t specify where children are on the autistic spectrum the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

OP I'm sending huge hugs . I have a nine year old who is autistic and like you also just diagnosed as ASD.

If I can give you one bit of good news is that you have had early diagnosis! My dc was only diagnosed last year after struggling since they were 3. It was the starting nursery that totally brought it apparent to me but I fought to get anyone to notice. Even on starting primary they have been classed as the 'bad' child until last year. I even managed to get the paediatrician to come to our school for a multi agency meeting where the deputy head stated they did not believe that they were ASD and it was simply behaviour. The paediatrician politely put her in her place .

I am not going to lie, my life has been a fight for them and still continues even with a diagnosis, my fight now is that they don't belong in mainstream and they urgently need an ask place but that's a whole other story.

What I can say is that my child is the most loving kid I know. I have so many good times with them also. Life certainly is not all doom and gloom. They have also made me look at the world differently. Before I am ashamed to say I would have had an opinion on a 'badly' behaved child in public for example a supermarket. Now I look beyond that and I totally see it from the parents and siblings point of view.

You lost certainly need a thick skin, but there are a good number of groups online that can give support and allow you to vent. Feel free to private message me if you want. The first few weeks and months are extremely unsettling trying to take in a diagnosis but things do get better because you develop an understanding xxx

I understand what you mean Olivere, what you want - some sort of certainty and insight into how you can help your son as he grows up, how to support his needs.

My DDs were diagnosed in their late teens, and covidaintacrime beat me to it with that diagram. Our clinician said "spectrum" (a linear idea) isn't useful to describe autism, think of it more as a kaleidoscope (like the diagram) and everyone with autism will display different strengths/weaknesses just as you would have different colours each time you shake a kaleidoscope.

So no one will be able to say how your son will be, what kind of schooling he will need. Because each person with autism exhibits individual traits - I'm sure you will have heard that before.

Diagnostic methods and thinking constantly change - not always useful for us familles. My kids are telling me it's now ASC, a condition rather than a disorder. In France autism was still technically a form of psychosis until 2012 apparently, thankfully that has changed.

Your son is lucky to have you

Thank you all so much, it means alot that you will all take the time to offer support and advice. I'm taking everything on board

I'm going to sleep in a mo as DS is an early riser but I will be back tomorrow.

Thanks again All x

I know living with the uncertainty is extremely difficult, but unfortunately they haven't told you because they just don't know. Two children with asd who may present fairly similarly at 3, may well be drastically different at 16. It isn't something with a predictable course and there are so many factors that affect how things will turn out.

My eldest child has asd and dcd. I think he looked pretty severe preschool. He didn't walk until he was 2.5. He had some words by 3, but very few and certainly wasn't conversational. Didn't answer to his own name, didn't point. Very much on his own agenda and in his own little world. I spent much of those early years feeling sick with worry. I cried alot. I spent hours trying to help his development.

In the end, his development came on when he was ready for it. He has done extremely well. He is 11 now and in mainstream school. Doesn't stop talking, plays the trumpet and has a wonderful sense of humour. Literally everyone that meets him loves him. He has no behaviour issues at all. But, I think that was luck rather than anything I did, he just needed a bit more time. Other children presenting as he did at 3 will be functioning very differently now at 11. But one thing is for certain, all the worry and all the tears made not a jot of difference to the outcome.

I know this is not really helpful, and I remember being desperate with worry when he was little, but unfortunately there isn't much choice but to wait and see and try your best to enjoy the ride.

You have to wait and see. My son is 22. To start with he Seemed very “mild”, mostly because he was always “well behaved”, no meltdowns or screaming etc. He’s has always been non verbal with very little understanding. He’s made gains and losses over the years. He’s now considered severely autistic with severe learning disabilities. He’ll need 24 hour supervision for the rest of his life, he’ll never be independent. However he’s still a lovely boy. He has his moments, has severe ocd which can be a challenge! He has occasional aggressive outbursts too but everyone who works with him agrees he’s absolutely lovely. His teacher told me at the end of term she’d like to keep him 🙂

I was advised my lo was likely on the spectrum (as I suspected from very young) by 18-20 months. At that point my lo was also diagnosed with global developmental delay and I was told that my lo would need a special school.
However, my area won't diagnose officially until 4-5 year of age. After a hearing op, the speech improved dramatically literally overnight and lo is now at school, though the youngest, is middle to above average.
Had we had the diagnosis at the first point, I have no doubt we would have, as was accurate then, have received a very "severe" outlook. By waiting, my lo was viewed as being L1 what would have been Aspergers. So yes that does bring some comfort that my child won't hopefully have the difficulties of the other extreme, but they have their own equally as challenging issues that couldn't have been foreseen at any point really in the combo they are. And it's an evolving picture. One need seems to be more pronounced then another exceeds it and then there's absolute calamity when it rains down on us from all directions. Beyond the obvious, it's not a static picture.
I'm not sure if that helps or not?

Hi,

I am autistic as is at least one of my children. Feel free to message if you want to talk about anything. I was diagnosed in my late 30's and have a successful career. My son is just 7 and we don't know what the world will look like for him in the long term. He was diagnosed at 3, he was pre-verbal then but now he doesn't stop talking

Every journey is different but there will be learnings from all of them. Can I recommend one of the first things is listening to autistic adult voices. There are many groups on Facebook such as Neurodiverse UK, Autism Inclusivity which are run by adult autistics and parents of autistic children. You will also find groups who are (in my opinion) not the best for guiding you as there is a lot of "autism mums" and parents who make it more about them than their child.

It is a huge learning curve and it will take time to get your brain around it all, you will need to feel all the random emotions from sadness, anger and relief that you have answers. That is completely ok too! I do a lot of advocacy work and am happy to offer support/advice/direction pointing if you need it.

Hi OP, sending you lots of love right now as you may well feel like you've been hit by a bus and then had a load of conflicting and hard to understand information dumped on you for good measure.

My son was diagnosed at 3, that was 4 years ago now. They didn't give any levels or indications and I believe that's for the best. As a previous poster said, he was diagnosed then along with various other children at his special school and they have come on in leaps and bounds where he hasn't. Not to say he hasn't developed and grown in his own way. He's still non-verbal whereas others have gone on to speak (some amazingly well!) but I think I would have been more upset had I had predictions or projections that never came to be - so far.

Our children do things their way, in their time, and the best way to support that is the highest level of specialised attention, so if a specialist nursery is offered then snatch their hand off, likewise with speech and language, OT. If things go fabulously then they may well integrate into mainstream education and other things too. If not, and progress is slower, you've had those building blocks from day one and are giving them the best tools and attention to be all they can. It's really hard to deviate from the path you thought your child would be on, but all steps on all paths are just as special and important and that will become clearer with time, hopefully.

Always only a message away.

My DS2 is 23 now.
Non verbal til 5, special school all the way through...no gcses or anything like that. He also has OCD (medicated) and learning disabilities and Ucerative Colitis as well!
Is now in his 4th year working at our local Asda, well known and absolutely adored by his regular customers . His autism makes him the BEST employee.. he's on time (to the minute) does exactly as he's told and remembers every single customer.. which is why they love him. Has won awards for customer service!
Still can't shave himself and needs support for all daily life stuff,, eats his clothes (and wood, paper, plastic... and ate his asda lanyard !), has a repetitive conversation, will never marry or leave home...
But compared to the little boy who didn't walk til 3 or talk til 5... he has exceeded all expectations. He will always need us, always be autistic, but frankly.. he's bloody fabulous in his own unique way!

(and I have to add.. huge praise for Asda for giving him a chance via mencap, to show he CAN DO)

I've worked in special ed for 16 years and one thing I can say... the kids surprise us all the time. You just never can tell how they will develop, but if he has a bit of speech already... it bodes well :)

That question is one of the most frequently asked on the MN SN boards.

Hope you've seen the Rebecca Burgess comic strip linked to upthread that shows that the spectrum is far from a linear concept.

Every autistic person has a set of strengths and weaknesses individual to themselves, no two are alike. Tony Attwood didn't even notice it in his own son.
www.theguardian.com/society/2017/sep/25/why-the-world-expert-on-aspergers-took-30-years-to-notice-condition-in-his-own-son
Asperger's isn't used as a diagnostic term any more.

This explains a lot about the terms high functioning (which does not mean able to pass for NT most of the time so needs no interventions) and low functioning (which does not mean can achieve very little) and why they are also not accurate descriptors of someone's abilities.
neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

One thing you may not have observed yet but will probably happen at some point, just because an autistic person can do a certain thing one day does not mean they can always repeat that in the same way.
the graphic equaliser image shows this to some extent and explains how it depends which bits are turned up high at any given time can affect someone.

You will notice as your son grows that some things which affected him greatly and caused extreme reactions no longer do so and other reactions happen 'out of nowhere' until you discover a cause (trigger) and you will try and find a good intervention.

You will learn to be an excellent advocate for your son, you will support him in any areas that he needs it and you'll fight for his rights to ensure he gets the best support you are able to source. You will have to be "that parent" sometimes, but you'll achieve the best for him that you can. And it won't be long before you can write a supportive message or two to a parent asking what you did in your OP.

I agree with PP who say it isn't linear. My DS was very challenging as a small child. I despaired at the time thinking this could only get worse as he hit puberty (visions of being attacked by a child bigger than me) but actually the opposite has happened.

He's gradually mellowed and now at nearly 17 he is making decent progress in college (after spending most of secondary out of education) and with social skills/communication. It's not all plain sailing but a much brighter future than the one I anticipated and our relationship is getting better all the time. Aggressive meltdowns are a lot rarer now and he hasn't hit out at me, his Dad or siblings in a few years.

His speech and language still isn't great and I do still struggle to understand him sometimes. Quite a bit of SALT was attempted when he was younger but he was extremely uncooperative as a child. I think he would still benefit from it even now but I can't imagine him agreeing to it. Even now he's fairly resistant to support although he's accepted his college support worker pretty well which has been a huge positive. I think this might be because he's a youngish man himself who DS perhaps can relate to a bit. Up until now they've all been women, most who were great but I can see he might not have clicked with them the same.

Sorry if this has turned into a bit of a late night ramble but it might give you a picture of what parenting an older teen could look like. Although there are so many variables every journey is different.

My ds was diagnosed age 9, he has attended mainstream schools, passed his GCSE's, is currently studying 3 A levels & is the poster boy for our local Young Carers group as he cares for me & his dad, has recently appeared on the local news being interviewed on Carers day. He is an active member of the Green Party & is on the local transport planning group using his knowledge of bus & train routes which is part of his autism. Don't look at the negatives, look at what your ds can do & give him experiences to help him learn new things, ask him to find something like his wellies, then talk about the colour, why we wear wellies, help him put them on & maybe go puddle jumping or play in the snow, make everything a positive experience to make learning fun.

I remember getting my DS's diagnosis when he was six and the lack of detail frustrated me immensely. They didn't even put in what caused the diagnosis, only that they had are

Whatever they told you is massively incorrect and untrue. I wouldn't take anything for fact until you've gained an intelligent opinion.

I don't know why this posted.

Anyway, we are 4 years post diagnosis. My DS is extremely sociable (always has been) and from that aspect leads a normal life similar to an NT boy, in that he has friends, loves his gaming, plays football etc. Academically he is behind, but not significantly enough that his school would push for an ehcp, so this is probably a battle I need to fight on my own. He does not like change, and when younger would go into meltdown during transitions, but has improved a lot.

My DH thinks he is also on the spectrum as he sees a lot of himself in DS. DH is both sociable and a recluse, and he is very able, has two degrees and is successful in his career.

When DS was 3 like your boy his speech was still very basic, with 2-3 word sentences and a lot of gibberish. He never had a word explosion, but his speech evolved gradually. We always read and talked to him a lot. He still sometimes comes out with gibberish, but very rarely. He used to ask inane questions a lot if the time, but has been getting much better at this.

I know every person with autism is different, but maybe it reassures you to read how our DS has developed so far.

Your DC all sound wonderful, it is lovely to read about how they have grown and developed. I take comfort in these replies because it's something of an insight, perhaps not how DS will turn out himself but to hear about the potential in other children and young adults with ASD. Thank you

If I'm to look at the positives in DS' case, there are plenty. I'll share them with you.

He can tell me what he wants now (usually juice - which he is obsessed with) but many other things such as dinner, cookies, penguins (one of his favourite cartoons Happy Feet), bath, dummy, blanket etc.

He can ask for his grandma, me and his dad when he wants either of us. He shouted for me to come to him for the first time ever last week and I could have cried! His pronunciation is a bit off and he calls me "money"

Every morning he comes and climbs onto my bed and announces "want chris" which means he "wants crisps"

He can count independently from 1-30, he knows many colours, he knows and can recite his ABC. He can sing along with some songs. There is just no back and forth comms yet, other than the fact he can answer "Yeah" if I ask him whether he wants something.

He has a good understanding of how to use his tablet which surprises me for a child of his age given his SN, he has been navigating it like a pro since being under 2.

He is more tolerant of other children than he was a year ago and will now happily play with others (chasing, playing boo) rather than just parallel play.

He now thoroughly enjoys baths whereas before he couldn't tolerate them, too much going on sensory wise.

He used to be terrified of the Hoover and go into meltdown but now he can tolerate that too.

He wears ear defenders if we are going somewhere busy and he accepts those now whereas before he wouldn't let me put them on his head.

Hair cuts used to be impossible and he'd thrash and scream but now sits there happily.

When I focus on all of the above the future doesn't look as bleak as it does when I focus on the negatives (aggressive meltdowns, head banging etc)

He began to point a little this year too which was a milestone he never met when younger.

He's quite delayed in some areas but in others I dare say he's maybe a little bit advanced? Like knowing his ABC and being able to count to 30 before the age of three.

I think its worth remembering that children with autism also have their own personality just like other people. They are just 100% autism.

That if you have a NT child you dont actually know what the future holds for them either. You might hope for a good job, wife and children but life can take lots of unexpected turns. You just do your best to give them tools to cope, same if a child has autism.

That the human brain keeps developing until 25. the cygnet course really stressed this. so your child will keep developing until then so some of those skills may come along.

My 3yo has the same issues as yours, though he is not yet diagnosed.

I joined a Facebook group led by autistics - it's quite illuminating. They don't find the term "spectrum" useful at all because it is effectively labelling a child and autistic kids at say "level 1" can still be very different. Rather they suggest addressing a child's individual needs.

DS is on some long waiting lists for SALT and OT which I had to seek out and self refer to myself. Naively I had hoped that these things would be promptly forthcoming once we had his diagnosis.

Unfortunately this is how it is. I've found that we needed to drive every bit ourselves from first referral and diagnosis to getting the EHCP in place. There's some good guidance on The National Autistic Society website (www.autism.org.uk/) especially around getting support in school when he gets to that stage.

DD was diagnosed at 3 and was similar to how you describe DS. I asked doctors the same questions and was told time will tell.

As it turns out, DD has also severe learning difficulties but is a happy child.

It's inspiring to read these accounts of people with autism having careers, driving, having families.

what is that supposed to mean in relation to those who are low functioning?

He can count independently from 1-30, he knows many colours, he knows and can recite his ABC. He can sing along with some songs.

DD was the same. Turned out this was all rote learned and not a proper cognitive/functional skill.

Arent (not are) oops

i went to some training recently that suggested that in future people won’t be diagnosed with ADHD / ASC / PDA etc; it will simply be ‘neurodiversity’. I prefer that, tbh.

Fuck that. You cant group different mental illnesses under 1 and the same umbrella. That is f-ing unhelpful and just plain wrong.