Does ASD get better or worse? For kids and their parents?

[WorrierPrincess]

Hello, I'm new here and desperately in search of wise words. Any help/thoughts would be so hugely appreciated.

DS, nearly three, is having his assessment for ASD in a couple of weeks, and I'm really struggling to cope with it all. Hiding upstairs crying, actually.

If I was being sensible and grown-up I'd be focusing on the positives. He's verbal (very), bright (paed has already said no apparent learning delays), affectionate (to us, fave carers and DD) and although he has certain things he's into to an unusual degree (certain songs, games, tv shows, trains, numbers, the alphabet etc.) he doesn't seem obsessed by routine and regime and isn't fixated on just one thing in particular. He also deals just fine with the new and unfamiliar (holidays, trips out, different foods etc). He's not violent, either at home or nursery, and any tantrums blow over pretty quickly.

The problem is, I'm just crap at being sensible and grown-up. If anyone's obsessed it's me: I watch him for evidence to file away in the box marked "ASD - life is over".

Realistically I'm sure he IS on the spectrum: poor social skills, strange use of language, echolalia, quirky interests, little understanding of conversation, unwillingness/inability to follow instructions, answer questions, recall what he's been doing etc etc.

What I'm really struggling with is the uncertainty: what does the future hold? Is he going to improve and be able to lead an independent life? Or are we teetering on the brink of a regressive decline, where he descends more and more into himself?

I guess what I'm asking is really this: I think our son is somewhere on the spectrum. But is his little spot a fixed shade? And is there a risk it could get gloomier rather than brighter?

Be honest please: what's your experience been? And thank you for reading this.

Your ds sounds very much like mine (had an ASD diagnosis). To be honest he has changed so much in the last year, in a very positive way and I think with the right support he will continue to do so. I don't necessarily think his life will be a breeze but I think he had the potential for a happy future

my son is almost 6 and non verbal and still in nappies. we knew he had autism when he was 2 1/2.
tbh, i find it all very depressing. our lives are a constant struggle.

the best advice i can give you is to keep coming back to this topic on mumsnet. over the last 3 years i have found that so-called professionals know practically nothing, whereas i have had so much good advice and support and information from other parents on here.

i dont know whether your son will decline. probably not. believe it or not our son hasnt! but every step that is a tiny, un-noticable thing for NT kids, is a giant, big deal for us. eg, learning to use a swing properly.

good luck. whenever times are tough you will find support on here. i know, times are tough all the time! i dont know any parents of kids with autism who dont cry about it.

Thank you Catsdontcare. How old is your son and has he had any particular support/therapy etc?

I only recently had an ASD diagnosis for dd, she's 8. But I've always "known" there was something TBH. Back when she was 3, it was very difficult, she wasn't violent, but her tantrums were of epic proportions would last for hours at times and very very draining. I found it very trying. She wasn't very verbal, she could talk but you couldn't hold a conversation with her and it so hard to figure out what she wanted or what was wrong. She was very fussy with food, with clothes, any kind of change would result in a meltdown. She wouldn't stay with anyone who wasn't me or DH.

It has got so much better since then, she's almost like a different child. She's very warm, affectionate, chatty, interesting now. I think the turning point was actually when she started school funnily enough. We were so worried because it was such a big change, but she took to it like a duck to water. She still loves it. She does have learning difficulties she's very behind, but she tries so hard. She's always smiling these days, she loves Lego, (but not obsessively). She's very easy to live with now, back then it was so hard, now she's such a delight.

I do worry about the future, but just hope she carries on as she is now. I hope it will be similar for your DS

Thank you thirteentales. It seems one of the hardest things is to stop comparing with NT kids.

TheFeministsWife, so encouraged to hear of your daughter's progress. Thank you.

Life isn't over. It's just DIFFERENT!
If someone had told me when my son was 4..non verbal.. happy but in his own world, that he would now be the delightful 14 yr old he is today I would not have believed them. I was UTTERLY despairing!

We were told he wouldn't talk (or possibly walk either as other issues too) He does both. He has learning diffs too..attends a special school, but he is friendly and happy.. and has none of the teenage angst my other children have gone through..because his world IS different; his obsessions absorb him completely, he accepts everyone as they are.. he is a pure soul .
I have NO idea how his life will pan out.. he is unlikely to be independent and unlikely to marry, drive have children, might just have a supported job or voluntary work.. I don't know. What I DO know now is that I wasted too many tears worrying about the future I had imagined before his diagnosis, and I know that he has his whole life to continue to develop skills and become the best he can be.

We have had good years, and not so good and as he has grown up different aspects of his autism have presented different challenges along the way, but we adapt as we go. it's impossible to 'face it all' at once and you don't need to..just support your son now as best you can and he will lead the way:)

It's funny.. I was devastated when my DS was diagnosed, because I saw his whole (my imagined) future swept away. Recently my eldest DD came out as gay.. and I realised that it's not up to me to imagine their futures..any of my children, because at any point things may change for good, or bad, or (as in my lovely DD's case.. just DIFFERENT)..

Hang in there!:)

My DS (now 11) was diagnosed with AS at 5 although I knew there was something wrong much earlier. He sounds a bit like your DS, hopeless social skills and was always wandering off and in his own little world. He had help at primary school in the class room (he liked walking around and did not like doing what the teacher said) and social skills sessions which were invaluable. Gradually he made a couple of friends at school and started to develop academically. I knew he was intelligent but he struggled to write more than a few words for many years. He has however improved so much over the years and now is at a mainstream academic private school where he doing well. He still has AS of course and sometimes behaves a bit strangely - his social skills are still not brilliant but he is learning. I can't believe the progress he has made over the years. It has been a struggle but I am so proud of DS, he has tried so hard to overcome his problems. It has made me and my DD much kinder and better people and I am much less judgemental about other peoples problems now. So ASD definately can improve and you can learn ways of dealing with it. I really hope your DS gets the help he needs, I well remember feeling like you describe and things are so much better now.

I am 2 years into the diagnosis and like you felt utter despair at first but he has had a huge amount of support which has definately helped him and he is a lovely boy. I have joined a local autism support group which is mainly mothers and I have made some good friends through this, which has been hugely beneficial to me and my mental health.

Big hugs if you ever want to PM me feel free.

For us, it is so very up and down that at times it's hard to say whether it's getting better or worse! DS2 has Asperger's, and looking back I can see all the areas where he has made huge improvements, but there are still things he does on a daily basis that drive me to despair and he is quite far behind at school. I worry that as he is getting older, that gap between him and his classmates will widen to an extent that he'll have to move schools or stay down a year or something. There are so many unknowns. The thing is, I could say the same about my NT DS1 - he might do brilliantly in future, he might drop out of school or get in with the wrong crowd (definitely not a worry with DS2 as he is not at all sociable ). I try to just do my best for him one day at a time and not worry about the future too much TBH.

Thanks so much for all your kind and supportive words. It's made me sniffle again so it's just as well DD has been kicked out of nursery and I've had to collect her. Blubbing at desk is SUCH a bad look.

Anyway I will keep referring back to what you've had to say, especially "life is not over, just different".

I've known deep down for a long time that our life was different already anyway. But I suppose part of me has been hoping it was something else, something fixable, going on (there have been a few glue ear red herrings along the way) and my naive dreams of motherhood - somewhere between the Beckhams and the Boden catalogue - were going to come true sooner or later.

Like I said, the "being grown up and sensible" bit continues to be a bit of a problem...

What a lovely post medusa it brought tears to my eyes purely from your positivity and honesty. I need to read more posts like yours as I am in the grieving process about our ds's dx. I hope these messages help you worrier as I can totally relate to your fears but I am very slowly learning how to live with them. Good luck.

Both and both.

Some days / weeks / months are better and then some are much much worse.

Someone once described it like a graphic equalizer with lots of different levers and some times his social bits would be high, but his communication low and his imagantion neutral and then they all flip round again.

DS is nearly 14 and had a diagnosis when he was 6. When he was that age I couldn't imagine how life would be where we are now, and now I cannot imagine where he will be in another 8 years.

Ok, since we are talking about "different", have you read "Welcome to Holland" here. Be careful though, it might make you blub, it just brought a tear to my eye reading it again, but in a GOOD way I hasten to add!!

Things are much better than they were. Of course our lives are more limited than other people's, there are lots of things we would like to do as a family but just can't.
I do have worries about the future, but I try not to dwell on them too much as tbh the same applies to my NT daughter, who sometimes causes me much more trouble than ds!
Never mind Holland, there is a line in Desiderata that makes me feel stronger if I'm having a bit of a wobble :-

"Nurture strength of spirit to shield you in sudden misfortune,
but do not distress yourself with dark imaginings"

It reminds me that often the worrying about what might happen is much worse than the reality when it does happen. It's certainly been the case with ds. When he was first diagnosed as a toddler I was terrified of what he would be like when he got to age 10/11 (imagining a big toddler I suppose), but now we are here and I know that most of those fears were groundless. All those sleepless nights for nothing!

I love the Holland story. For a long time I thought I was in Italy but couldn't understand why things weren't as I'd heard or imagined.

Op my ds is slightly older than yours and I just don't know. His progress seems to be two steps forward and one step back. Maybe its good to keep a journal and be able to mark long term progress that way.

I cried a lot last year, but at the moment there are more dry eyed days than weepy ones.

Ps I'm a complete bore about this, but ds's montessori nursery has been wonderful for him and partly why I'm so much happier atm.

Ds is 4. He's been having weekly speech therapy for over a year now which I do believe has made a huge difference. He just seems to have made a large leap recently and suddenly become interested and excited by his peers. He's rather out of sync with kids his own age but just the fact that he wants to be social now is a big step forward!

The Holland story is beautiful. And Pixel, I am with you on the horrors of dark imaginings (literally dark as they invariably strike at 3am)

So basically the best way forward is to a) embrace Holland and b) stop cacking yourself that you've not only landed in Holland you've landed in one of those random Easyjet airports that's nowhere near the Rijksmuseum.

Catsdontcare, thanks for the reply. When it comes to intervention I just feel like I should be doing absolutely everything now, now, NOW or I will have let DS down and missed some mythical window of opportunity. Need to stop. Breathe. And try to smell the roses (or should that be tulips?)

Oodles, yep I think that's one of the cruellest things about ASD: for such a long time you really do believe you're in Italy and you're having a lovely sunny time on the beach with everyone else.

WorrierPrincess, your DS sounds so like mine it's made me all shivery.

My son is in pre-school and has come on soo-oooo much in the six months he's been there. He has started taking notice of the other children, occasionally interacting with some of them, and has started to talk a LOT more. A large proportion is still echolalia but more and more is original. He even started asking questions, like: "Where is the bus, mummy?" (I nearly swooned). He is less and less in his own little world, and responding more to comments/questions we make to him.

Naturally every child is different and I'm not saying that all will be the same for your DS. But it is certainly possible that he will make good progress in the future.

(Just read your opening post again and thought how spookily similar our DSs sound - the only difference is that mine has suffered a speech/language delay.)

I hope you don't mind my posting, as my experience isn't terribly lengthy and I can't really offer the same support as posters with older DCs. But everything about your post rang so many bells!

I spent a long time thinking about this thread, and how although things have got better in some ways DS2 is still very much a loner and always hovering about on the outside of things. Then yesterday we came home from school and he said "you know how I've never had a friend? Well, now XX is my friend and wants to come round for tea" I almost fell over, then I almost cried (then I started to panic that if he has a friend round for the first time ever in 8 years they will find out exactly how quirky he really is!! )

Oh gosh yes I have just got past that panicky feeling of I'm not doing enough I need to do everything! It's very overwhelming and you feel like time is running out to do everything!

In the end I made a really long list of avenues I want to explore and prioritised them against ds's biggest areas of need. Speech is his main issue so has been my main focus. There are other areas obviously and I'm tackling the most immediate one's whilst been mindful of the future.

I have slowed down though as I realised that ds was in danger of becoming a project

The other thing I have focused on is making sure everyone else involved with ds is doing what they should and are all on the same page like Pre school for example