to think our lovely family wont ever be the same now

[tigerpug]

big dramatic title, perhaps less dramatic content (although not for me)

After a year or so of assessments, yesterday our lovely 3 yo DS was officially diagnosed with autism. My head is reeling. I knew that he was different to his peers from a very young age, but after years of reassuring comments like "boys will be boys" etc I honestly thought that I was overreacting/overthinking it all and that he wouldn't be diagnosed with autism.

Yesterday I was told that he will always be autistic, and that it would become more obvious and problematic when he starts school. I do wish the consultant had been a bit 'softer' in her approach, and that I had asked DH to come along with DS and I for support, but in a way I suppose it was a relief to put an end to the 'is he isn't he' debate that played in on a constant loop in my head.

DS is kind, happy, confident - perhaps overly so, which is the main cause for concern. He struggles with the social side of things, he gets overly excited and over confident, which I think causes other children at pre school etc to move away from him, I think he can be seen as an annoyance - loud and bouncy. We are new to the area and consequently I dont have a network of friends with children to conjure up throughout the holidays. He has no real friends, although is desperate for some. He asks about birthday parties, best friends etc, things he hears about but hasn't really been able to participate in. Thinking like this breaks my heart.

With 6 weeks ahead of us, I decided to take him and DS2 to the park today for him to let off steam. He approached a group of older children and straight away joined in their game of standing on the roundabout, whooping with happiness, constantly chatting and babbling and repeating certain phrases they were using (he does this a lot). They looked at him like he was mad, laughed at him, told him to stand on the roundabout and took it on turns to try and knock him off it (by pushing the roundabout faster and faster - before I had to intervene). They tired of the game and then just kept running away from him. He asked me where his new friends had gone. I am not a crier, I am rarely emotional. However, I sat at the side of the park watching it all and sobbing, entire body heaving sobs.

I think I need time to let the news sink in. There are many things to be grateful for, including the fact that DS is unaffected by many of the traits that can go with ASD. But at the moment I just dont feel like I can cope with the constant feeling of sadness for him. I would do anything for him, but I cant get him a friend can i? Or protect him from situations like today, which will happen so many times in his childhood. I have been keeping a brave face as best I can, but husband is away tonight and I am lying in bed feeling dreadful.

[saintlyjimjams]

Well I'd change it - ds1 is a teenager, non-verbal which he HATES & when he is anxious can't do the things he loves doing.

However, I'd change it mainly for him. And amongst all the difficulties autism has change our life profoundly & done of ways are good. We have good friends (those who are no use in a crisis cleared off), wonderful people we would never have met without ds1 & experiences that we'd never have had with him. We seem happier than a lot of people with do called perfect lives - having a challenging life doesn't have to mean it's an unhappy life (& I write that at the end of the worst week - autism wise - we have had for about two years)

[ChoosandChipsandSealingWax]

Cross posted with dayshift yes I wouldn't go so far as to say I embrace it, it's definitely more accept.

What makes me more ambivalent about waving the wand now is that he is so much more out of his shell now and very much showing his character and personality - and the autism is very much part of what makes him him. I love him so very much; I wouldn't want a different child, though I do wish it didn't have to be so difficult, for me - but especially, for him.

[CalamityKate1]

Exactly Choosandchips.

[GrannyOnTheSchoolRun]

WaveorCheer, this is just to say that I totally get what you mean though in years gone by I would have been on the other side of the fence.

My son, now a young man of 23, has Classic Kanners Autism, (it means its about as bad as it can be) Tourette's Syndrome, and over the last 3 years he's developed quite a few of the severe mental health problems our childdren can develop as they get older.

I would now change it all for him in a heartbeat even though we are in the position to still have him at home with us, with round the clock two to one care, and we have the means to give him a 'good life'. The reality is that no matter how much we love him, and no matter how good a life we give him, his life is bloody awful and one that I wouldnt wish on anyone.

Ive just recently become a granny for the 5th time and if I had to wave the wand for any grandchild of mine I would, the first day we noticed something that didn't seem as it should. In fact given the amount of autism and autism related conditions there actually is in the extended family I would be happy for any of my children to go through prenatal testing if they could and for the pregnancy to be terminated if thats what they wanted to do - and they would.

Autism at this end of the spectrum with all it can entail can be just awful and the older the children get the worst it can become. There is absolutely no guarantee that what you put into your little one will lay the foundation for the adult they become. The brain is more powerful than any of us and there are some things that just cannot be kissed and loved better.

[GrannyOnTheSchoolRun]

And yes we would change it for him, but not for us - we are who we are because of him. And the reality is that no matter how hard a day can be for us when we are helping him through life, our worst day is always going to be heaps better than his best.

[ChoosandChipsandSealingWax]

Missed stillenachts post too but yes absolutely what she, granny and saintly are saying is all backing up michaels post - it is very different at the severe end. DS is "moderate to severe" so his life has many more moments of joy than pain, and there is still hope for us of a functioning life - if there wasn't, I don't think I'd have that ambivalence.

Like Michael, we are more on the "out and proud" end of the scale - it's likely that DH's and my DFs both have autism and DH and I are probably aspie, as is DD (not sure yet whether to go for a diagnosis for her). It's a very, very different story.

[Dayshiftdoris]

Sorry I will just add that my son is 'high functioning' - he's in mainstream school, average to above average intelligence.

My friends who do embrace autism have children across the spectrum - I would say more with lower functioning embrace it than.

I help run a group for parents who have children with higher functioning children and there is very little embracing going on amongst our parents. Lots of love, laughter and acceptance against the despair, sadness and grief...

A friend of mine, with a child (well teen now) with severe autism said 'I always think you guys are worse off... Everyone knows my son has a problem by looking at him but it's not obvious for yours and he has to try and live in a world that he knows he doesn't fit in - it's the cruelest blow'

I went home and cried But it showed me that parents understand parents

[ChoosandChipsandSealingWax]

dayshift that's also a really interesting perspective. Being an invisible disability, it's true they are not generally given allowances.

Granny given the amount of autism and autism related conditions there actually is in the extended family I would be happy for any of my children to go through prenatal testing if they could and for the pregnancy to be terminated

This has made me think, a lot. We likewise have a lot of us on the spectrum.

One of the things they said to us during diagnosis is that we should think very carefully about having any more DC, as the chances were so much higher of us having another DC with autism.

Should they have DC, none of my DCs pregnancies will be free of this worry, will they?

[ChoosandChipsandSealingWax]

(Not that any pregnancy is worry free of course. But I hadn't really thought before about the longer term impact for my other DC in this respect).

[GrannyOnTheSchoolRun]

Chosechipsandsealingwax, this is the latest information I came across recently regarding 'the chance'. It was mentioned in the DM and there is more out there on google.

Im not really up on the science of it all, or perhaps that should be the statistics but there is much about this study that fits nicely with us and our experience as an extended family and Im very comfortable with it.

Re your children, no, they won't have worry free pregnancies, but its like what I say to my children who all want, or have children - if anyone can deal with it, we can.

sfari.org/news-and-opinion/news/2014/environment-genetics-may-contribute-equally-to-autism-risk

One thing I will say though is that Im not convinced about the environmental aspect of what can cause autism. I prefer to think that if there has been an environmental factor to a child being on the spectrum there was a pre-disposition to it in the first place.

But this is all going in a very different direction to the OP's original post so I'll just leave this alone now to go and prepare for Eid.

Have a nice day everyone :)

[WaveorCheer]

Sorry to be so down all over the thread. I really am in the angry stage of my grieving process at the moment. We're waiting for a likely ASD diagnosis - probably high functioning although there are some big ?s over his receptive language skills. He's very impaired by his sensory issues and stimming. But he is still a lovely, funny and sweet little boy.

[GrannyOnTheSchoolRun]

Its ok, Wave, it really is.

If I can be of any help to you please feel free to Im me, I have extensive experience of sensory issues.

[Flowerfae]

Hi, my eldest who is 9 was diagnosed with autism when he was nearly 4.
It is difficult, and it can be very hard but can I just say... your family has not changed, and he has not changed, he is still the same little boy he always was. The biggest challenge I have had so far with my son is other people's attitudes towards him and I'm sorry to say that does not get any easier. Your family however is completely the same as it has always been and your son sounds lovely :)

[ocelot41]

Just wanted to send you big hugs OP. That must have been a heartbreaking incident for you. What a horrid, mean spirited game to play. I would have sat in floods of tears too.

That consultant sounds an arse as if s/he handled that poorly. Have you tried calling the National Autistic Soc helpline? They really are ACE at support.

If it helps at all, one of my NT DS' best friends is a little boy on the A/S. We both love his sunny, open, outgoing nature and his high energy boisterousness. He is FUN!

My friend (his DM) once confided in me that her worst fear was that he would never have a real friend ( he didn't speak at all until quite late - 3 ish) and my jaw just hit the floor because to me ( and to my DS) he is such an obviously lovable little chap. I mean as soon as the boys see each other they run to give each other a hug!

So please take heart, all of the qualities you mention are not going to be perceived by everyone as 'annoying'. We love our little Tigger friend for all his Tiggerishness!

[happytalk13]

I'm sorry to hear this. It is a shock. You have described the first few years of my son's life. He is 9.5 now and we are only just working towards a diagnosis.

Whilst it is a shock I personally feel it is better now, at 3, to get the diagnosis and hopefully the right support services and to know where you are headed roughly than to flounder and wonder what the heck is wrong and battling with schools who are clueless as is often the case with children who slip through the net and are diagnosed late.

Good luck to you. Your family is still wonderful and your little boy is still ace - hard as it is try to see this as a chance to help him rather than watch him struggle with little clue as to why and fucking it up as you go along in the dark.

[happytalk13]

And WaveorCheer - you're not alone.

I'd change things if I could , for my son, because he struggles socially.

I'd change the bullying he went through that the school just ignored again, and again, and again.

I'd change the derisive looks and sniggers from kids he meets in the park.

I'd change the fact that people take advantage of him not reading social situations well and, for fun, purposefully get him into trouble and he can't defend himself so he gets angry and lashes out and so the adults around him then blame him.

I'd change the fact that I'm seen as 'that' mother by some - overprotective and unable to see her child is the disruptive one.

I'd change the fact that, as abhorrent as some people think my opinion is, there are some nasty little bastard kids out there who I would dearly love to throttle but I have to shut that part of me down and tell myself that they're only kids.

I'd change his regular tears and meltdowns.

[MisForMumNotMaid]

Another mum of Autistic child/ren here. My eldest son is diagnosed and now 10 youngest child, my daughter, is 3 - she has a follow up consultants appointment in a week. Middle son 8 is not on the spectrum.

I think the consultants words were harsh but true. With hindsight I'm glad for some of the early honesty, i wasn't at the time. Without it, I think I would have just tried to keep muddling through rather than reading up and getting support both emotionally for myself from forums like this and in person through ed psycs, speech and language, occupational therapy, speech and language and physio therapy.

A diagnosis is the key to unlocking so much support that can help you.

DLA and tax credits can help make a huge difference.

DS1 has friends. He's well liked. He's fantastic company. He's quirky but that actually draws some people too him. I accept it repels others, but that really is their loss.

He's a wonderful big brother and a great older cousin. He invents the most complex games and all the younger ones think he's some kind of king of all knowledge because he talks with such authority.

He finds some situations very difficult and struggles with sleep but he's still a child, his social development is at a different rate to others but he is developing. He is starting to understand when his emotions are becoming overwhelming and learning to withdraw to regain composure. This is an enormous achievement that could be the key to being able to fit within society's normal range of behaviours rather than sitting outside it.

I love the Holland analogy. I wouldn't change DS for the world he's fantastic and interesting and challenging. Elements of his behaviour I'd change and we have a never ending tick list of things we're working on but which one of us doesn't have the odd sharp corner that could do with a little rounding?

[ocelot41]

At the risk of sounding glib in the face of some of the very raw grief going on on this thread and given some of the very large differences which some of the good folk here are dealing with....

If your DS is high functioning and is genuinely interested in having children to play with, how about trying a structured gym, football, trampolining or rugby class when he is a little older? Thats how my DS and his friend met. High energy plus a bit of routine worked very well.


Please also on a general note, just try and be honest about the kinds of things that will make your child feel happy and more relaxed to any NT parents.Anyone who is worth being friends with ( and that goes for you as well as your child) will try to understand.

We moved on from the class to relatively brief playtimes at each others houses on other days which started off being a bit more structured and then got less so as the boys got more comfortable with each other other and developed their own routine. That's probably taken about 8 months or so? They are both four and a half.

So please don't assume that all NTs will run screaming for the hills if you try and talk about what would help your son make friends. Remember, if you do that you are also, in a sense, giving them permission to talk about what they may need. So you are doing them a favour too.

For instance, my NT child gets worn out by his AS friend's boundless energy and tendency to shout or chat very fast so a morning play often works better and it needs to be on a day when we dont have to do much later on so he doesnt get overtired. I also always need to go before my DS wants to - not because I want to get away from his AS friend but because he will hit 'the wall' of tirednesd before he knows he has had enough fun fun FUN! So...just keep talking and help others talk to you about what is working/ not working so well.

[IsItMeOr]

ocelot you sound lovely and thoughtful.

I think a shorter but positive play is better than a longer one that disintegrates into aggravation. Hard to manage with two small DCs mind.

[dawndonnaagain]

I would not change us and whilst I accept that things can be damnably hard, there are some of us who accept who we are and do not feel that we need changing, rather that society needs to change.

[GrannyOnTheSchoolRun]

Am laughing at the mention of Tigger. Its what we call our 6' 3" son because thats exactly who he's like.

And just to comment on language development. My son was 8 before he spoke a single word.

[saffronwblue]

I would not change dd's amazing way of viewing the world, her quirkiness and funny insights. I would do anything to change her predisposition to depression and the pain she can be in.

[Rnb]

Tigerpug I just wanted to give you a big unfashionable hug. My ds1 was diagnosed at 23 months with severe classical autism. Despite fighting for a diagnosis (and getting a very early one) I felt like I 'd been hit by a truck on the day we received it. So many unanswered questions about what the future holds...

Well, he is now 13 and I'm not going to pretend the journey has been easy but he is incredible. From being told he would never read or write he is now regularly achieving A grades in his mainstream school. He has friends and hobbies and is a kind, polite, lovely boy.

Re help for him, I can also highly recommend ABA. My son attends an ABA social skills after school club and it is brilliant (good ABA is nothing like the horror stories you may hear. We have done ABA since my son was 2 and it has been incredible).

The other thing I would say to you is don't just work on the 'deficits' but also work on his strengths. My son has an extraordinary memory and it really helps him through school, as well as something he loves showing off with! It gives him confidence, and is lovely to see him proud of himself when life can often be confusing for him. (I'm not suggesting all ASD children have a particular gift, but if your son does show a skill in something - go with it !)

Feel free to PM. Me anytime if you want to chat. I would definitely advise joining a local group. Good luck

[saintlyjimjams]

Can I just say that all the therapy in the world cannot work miracles. Whether it's ABA, RDI, Floortime (I like Floortime actually), Son Rise, biomed, or anything else. We spent years & thousands of £££'s trying various different approaches - each one promising a step towards normality. Meanwhile kids who had no therapy at all streamed ahead of ds1. I think back to those early years & remember the feeling of panic that I might miss 'the' key. And the frustration of signing up to try something, watching every other child progress & mine not.

What made the most difference for him & changed his life profoundly? 1) AAC - different types of AAC at different times (we still play around with that & always will) 2) GF diet in the early years until his gut had healed 3) Surfing - it gives him sensory feedback & has introduced us to a very accepting community.

Other things we did helped to various degrees but I'm not convinced they were worth the debt they left us in. There are a lot of people willing to part you from your cash when you have a child with autism - it took me years to realise I knew my son better than any of them. Yes I learned things on the way, & I use that information I spent a fortune learning, but if I had to choose one activity/intervention to keep it would be a toss up between AAC & surfing.

What I will say is that ds1 can access more ( on the whole - has has some bad days) than some of his more able friends. The key in terms of accessing life seems to be about anxiety levels rather than number of words for example.

Good luck - and follow your child's lead - they're unique & just because something is brilliant for someone else it might not be for them (it might even be damaging).

[GrannyOnTheSchoolRun]

Just picking up on the previous lady mentioning her son and being told he would never read or write.

My son was mute till about the age of 8 and he's never been to school. I did home ed with him and I'm so glad I never gave up on doing things with him because it was obvious once he started talking that he'd gone through life soaking up information like a sponge. It was all in there, he just hadn't been able to let it out and show us all he knew. Ok, we knew he was learning because he was developing skills and it was obvious he was 'clever' but never in my wildest dreams did I suspect the amount of knowledge that had gone in, plus what he sussed out for himself because of it.

He can also read, and do very simple arithmetic. And the funny thing is that his reading is probably better than his brother who's dyslexic.

Till last year my son travelled extensively all over the world to see his beloved steam trains, he's actually gold card frequent flyer on our local airline. The trips took 6 months to plan in minute detail and involved him travelling with 3 of us and every minute of it all was worth it. But sadly those days are now behind him due to the deterioration in his mental health and its been really hard for him to come to terms with. MY son is well enough to want to do things but unfortunately he now has to be told he can't do them because he is 'autistilics' (his very own word for being autistic) and that being 'autistilics' sometimes causes him to be stressed and not able to cope. I actually saw the end of his travelling about 3 summers ago but we kept on plodding away to make his holidays happen with each trip becoming more and more fraught with difficulty. And to be frank I was quite relieved when my son and son in law, both pilots, said to me last year when we arrived home, Ma, you know how much we love DB, and how much we want him to have his holidays and for you to be able to give him them, but we would not want DB on any aircraft we fly. They then went on to explain to me what it would involve if DS had a meltdown at 30,000 feet and it was nothing like I had imagined. They told me to think of his fast acting sedative working, its called Zypraxa, but the pilot still having to land the aircraft in the first safe place and armed guards coming on board to see what was going on and take us all off the plane. They also showed me the restraints that would be used on him by the crew till we landed even if he was by then fast asleep. My other children and husband were in agreement with them, as were the carers, and it was obvious that somewhere along the line it had been decided, look, let this trip happen and when they come back we'll say to Mama what has to be said. Im glad they did, I knew I had to stop the trips, and it helped that they made the decision for me. My heart is quite broken that my boys travelling days are over and right now he is having a very hard time coming to terms with not being where he normally would be at this time of year. Im hoping however that it will eventually go the same way as being told he can't drive a car, or touch a polar bear and a shark. That he will 'just' come to terms with it and cope with the reality most of the time, if not always.

My boy can cook, clean, wash, iron, clean his bathroom, make his bed and clean his room, wash dishes, set the table, clean the car that's for his use (we can't say its his car cos he'd want to drive it), water the garden, collect salad for me from the garden in the winter, make his shopping list then do his shopping, get concerned about his baby nephews crying, pick them up out of the cot and tell their mum to 'give booby'. He works out with a personal trainer at home 3 times a week and each day he does a home based triathlon designed to help with his sensory issues. It involves him swimming 15 lengths of the pool then going on his rower for 20 mins before doing a 40 minute work out on his cross trainer. Thats in the summer when its too hot to go out - in the winter its a daily 5k outdoor walk instead of the cross trainer. All of this also helps with the side effects of the very serious medication he's on and the weight gain it can cause.

In a few months we are getting him a pony to take care of, its something he did before, and we're going to re-introduce stable work into his life. My granddaughter rides and we plan to tie her riding and his stable work in with each other. He can also ride but finding a horse to fit him isn't always easy, giant that he is :D

That was just a wee bit more about my son [grin}