ASD / Aspergers struggling socially

[RainbowsandDaisies]

our DS1 has just been diagnosed with ASD (HFA/Aspergers syndrome). though upset for him it also came as a slight relief as his behaviour in social situations can be quite erratic. We got very little help or questions answered in the actual assessment - where do we go from here? He is doing OK at school (5yrs old) and they are very aware of his needs. He is fine at home when with his family but I am really struggling with him in any social situation - parties, in the park, when people pop in on us. I dont know whether to say "OK lets not put him in that situation" or whether to keep taking him to things to get him socialised. I am trying not to lose my patience with him but it is hard. He is the kindest, friendliest and most loving child but he can get SO loud / OTT / rude at times. I do not always handle it well and get very upset. I also worry as he is struggling to make friends. any Advice greatfull y received!

Hi rainbow welcome to the board :)

do you have any follow up appointments with anyone where you can go through the dx .. Both strengths and weaknesses or any sensory stuff that may have come to light.

It's great that school are aware and that you have things under control at home too :)

with regard to social stuff I personally tend to be a bit picky and choosey.. Some things I nudge ds into attending other things I don't as it would be an assult on his senses and just end in tears.. Some things as far as I'm concerned he just has to do ... But we plan and explain about what where when etc and give him notice.
Parties.. Well the odd times ds was invited tended to be in bowling alleys or sports halls and he just didn't and couldn't cope... All the excited children, hustle bustle and generally it was a nightmare for him.
For his parties we tend to choose a special outing or event with a small number of special people ( all who understand him).

I'd highly recommend the complete guide to aspergers by tony attwood.. Also you can you tube him.

One of the hardest things about getting the diagnosis for DD1 (AS) was that nobody tells you how to make these judgements.

We've taken to asking DD1 to be polite when people arrive but that she can excuse herself and go to her room if she chooses. She's 13 so much older than your DS but perhaps you could arrange a secret signal for when he's feeling overwhelmed or stressed and you could find an alternative activity for him?

Hi rainbow

I am no expert but there are lots on here! we are currenlty going thought the diagnosis process for our son who we think has Aspergers. My friend is a TA for a boy with Aspergers and she has been talking to me about social stories which she thinks work really well. I am sure these are mentioned in the Tony Atwoond book cupcake recommends.

Oh and the OTT and being rude thing... This is going to sound totally mad.. But he won't actually be meaning to be rude.. He'll just be saying what he's thinking ..
It's really common. But you can work through this using social stories and comic strip conversations ( google carol grey).

It's quite long road but things can be taught and improve..

There we go! We were obviously typing at the same time cupcake and me!

:) sugar.. They are mentioned by attwood.

Thanks for all the advice - I think social stories would help and have just ordered the Atwood book. The trouble with him telling me he is distressed is that he doesn't know it he is not that keen on other children (other than close friends nad family who he loves and is fine with) but he loves adults and gets over excited and demands all attention on him - I therefore dont think he would go to another place or activity neccessarily but will give it a go. Definately think preparing him for things and talking forthcoming situations through with him will help.

Hi Rainbows,
My DS (only child, 8) is finally going for his Asperger's assessment on 25th Jan and I totally identify with the worries about socialising. I began to relax and see things differently after reading the Tony Attwood book (glad you're going to have it) as so many things started to click in to place. We had been told he had 'Global Developmental Delay' but when he was about 6 he could tell the day of the week of any date. It made me realise that it wasn't GLOBAL delay - he had spikes of remarkable ability and so I looked into Asperger's and it explained so much. I realise now that the whole social world is an area of blindness, not impossible to 'learn' but it is really like a blind person feeling their way around the environment. My son just has no way of knowing what is appropriate but he tries hard - he will either hug every person in the room or blank them. He loves interaction of all kinds but he generally wants it to fit in to his fantasy world which is a bit hard for other children to cope with so he ends up on his own. He has no awareness that there should be any difference in behaviour to babies or adults. He'll shove little ones away alarmingly and has no inhibitions about standing up and addressing the Head Teacher in assembly.
On Tuesday we went to see the Secret Garden (he loves stories) but it was a long play and he started to act up, holding his head on his knee, talking, grabbing my hands and wanting to hit me. A few years ago I would have been mortified and desperately pleading with him to 'behave' but I just absorbed it and he responded to the calm by letting me give him updates on how many minutes to the end so he could bear to wait. I noticed some adults looking at me curiously afterwards (perhaps wondering why I let my son hit me?!) but now it doesn't bother me. DS's social problems are getting more pronounced, but so are his lovely endearing qualities. Keeping focused on the positive rather than the negative is what he needs. I'm hoping to find other AS children in the area to make friends with for 'normal' social stuff like play dates, etc as he is never invited by friends at school. Although I've invited children to us it's not reciprocated. You daren't keep asking in case the other parents (and children) are reluctant, which is understandable up to a point. He is a bit odd after all :) He also flaps when excited which will be harder as he gets older and less understanding children (and adults?) comment negatively on it. So far at school (he has a statement and 1-2-1 support even without a diagnosis) it's been fine as far as I know.
I agree that we (parents) have to be the problem barometer as DS also cannot tell me when or why he is distressed, it just comes out in unacceptable behaviour. Sometimes it seems so random and out of the blue... Things that have worked for me is pretending he has a mood switch (on his ear) which will help him change from grumpiness to more compliance (amazingly it works!). He is time obsessed so translating any issue into a fixed time frame helps too. Good luck - hope he finds a peer soul mate or advocate to shield him from 'the world', my DS has been lucky with very caring motherly girls who take him under their wing. But unfortunately he sometimes turns even on them.. the ed psyc related her observation of him in the playground - he'd gone out happily holding hands with a girl but a few minutes later he was scragging and semi-strangling her (sort of puppy play but too violent to be acceptable) and she went off to play with others and he was left all alone.... looking totally lost and with no idea how to find anyone to play with

Sorry so long folks...

Welcome Rainbow.

My son's 10 diagnosed with autism (though now, admittedly more of an Aspie) aged 4 yrs. His speech is good, he's a good communicator and WANTS (though suffers terribly with it) to make friends.

When he was sort of 6/7/8 yrs old, as a single parent and with him an only child, I tried all the usualy social outlets for him. Gymnastics, swimming lessons, Beavers, football at the local leisure centre. He always had extra help and I never left him, was always a "mummy helper" BUT, it was all too much. He just found it so very stressful.

Now, years later, he is quite the recluse. He finds it hard to go out of the house (at all) and though we encourage it, he finds it difficult when another friend visits us for tea after school (that sort of thing). We have to keep these events short and sweet and be guided by him. I usually end up playing Jenga or somesuch with the visiting child whilst my son sits in his room worrying if he's been "mean" to the other kid cause my son's had enough.

It's a touch one this. Yes, try the social thing with him (if he's up to it) but, not so that it causes him stress.

My son's just been diagnosed with full blown OCD (a nice little bedfellow of autistic spectrum disorder) and I wonder whether it's his way of saying "ffs....leave me alone - I can't be like "that"!"

No one tells you which way is best. Every situation is different. I've read many books and find Tony Atwood the one where I had many Eureka! moments because IT WAS MY SON ON THOSE PAGES. I also have a book called "It's So Much Work to be Your Friend- Helping the Child with Learning Disabilites Find Social Success" by Richard Lavoie. It's an American book. It's excellent - I got it from Amazon.

Good luck to you Rainbow and you'll find lots of support on here.

Hi, RainbowsandDaisies,

My ds1 was recently diagnosed with aspergers. Five was his most difficult year, because that was when he realised he did want and need friends, but wasn't exactly like other children. He is nearly 7, now, and is SO much happier and more relaxed and a lot better able to control his more embarrassing behaviours! We do talk an awful lot about why children behave the way they do, how he could behave, etc. He still finds the theory a lot easier than the practice, but once he appeared to understand himself that he needed to learn and practice social skills, he became quite a willing student! It might have helped that he has also had to work very hard at physical skills in his baby and childhood, because he also has low muscle tone and hypermobility, so has seen that if he does work hard, he can actually learn to do all the things that other children can do, so it is worth the effort. It is lovely watching his joy when he achieves a new physical skill, or realises that he can run a bit faster than he used to be able to, and now he is getting similar enjoyment out of little social successes (like the fact he actually has a friend this year). So, I would say, it is normal for you to feel upset when your ds is embarrassing or difficult, but that time and maturity do help an awful lot and it does get easier (at least until adolescence strikes, when I guess there will be a whole load of new issues!). I now love spending time with my ds1, even in public, and rather enjoy his quirkiness and find it endearing, whereas I used to cry myself to sleep worrying about him.

Hi Rainbow, can I have a turn too?

We've just filled in a huge questionnaire in advance of seeing a developmental paediatrician with regard to a possible ASD dx.

DS is 7 and has so many good things going for him I think its going to be pretty borderline. Academically he is ahead in most areas with, like TeaTime's DS areas where he's off the scale - at the moment its the molecular structure of chemicals - but the social side is excruciating sometimes.

Meeting neighbours in the street is hard as he simply ignores the ones he doesn't like. Sometimes I can handle it fine, but if I'm feeling low it can leave me in tears. I know I have to stick up for him and be his advocate, but sometimes I just don't know how.

I finally stopped taking him to an after school gym class because he randomly got so stressed about going. The teacher always said he had a great time when he was there and I'm sure he did. I worry that it will become increasingly hard to get him to try anything new...

Sorry, I don't want to hijack, I guess I'm just saying I'm right in there with you!

oliviaaah - I found perservering with trying to get my ds1 to try new things worked. We too gave up on gym class, but I kept banging my head against the brick wall until one day I realised we'd found with one or two activities where the brick wall wasn't there any more and he really did enjoy them.

The thing I find most frustrating about ds1 is that he has a phenomenal imagination and makes up wonderful stories. He has his little brother entranced and they leap about the house together in their amazing fantasy land - lots of children his age would love to join in with games like that. Put him with anyone else, though, and he's a little wooden puppet who either does what he's told or suddenly lashes out and gets cross because no-one realised he was getting stressed out.

ps ds1 has expanded his social horizons to cousins and his friend, though, and talks a lot about how he will approach other people. And he's quite happy to chat to strangers. He also does have minor interactions with others at school which don't appear to send anyone running for the hills! I find the gap between talking about it and doing it is generally about two and a half terms... So by Year 3, I guess we'll have to work on exactly how the interactions go more than how to start an interaction in the first place.

pps How can one get one's hands on actual social stories? Or are you supposed to know how to make them up, yourself?

Rabbit - google Carol Gray for social stories. Got to do the school run now but will check back in later.

Doh, I wondered where I'd got that info on social stories and it was on this very thread!thanks, Arsenic. Actually I was looking at it just now and one of the examples made me smile. Its the one about doing an art project and how some ASD children find it hard to draw because it doesn't come out like they see it in their heads. Just this morning my DS was doing a bit of work that involved drawing the characters in the story he had just read. Total refusal ensued and we were at stalemate. He couldn't even begin to try for fear of it being 'wrong'. So we got a bit of tracing paper, traced the pictures and stuck them in. Me?! Avoiding the issue?! AArgh!

Anyway Rainbow, I'd love to know how your assessment went and who actually did it. Was this a couple of steps further down the line or was it the first appointment you got through the GP? This is what I've got coming up soon.

Teatime, please let us know how it goes on the 25th. I do hope eventually that some of the parents at your DSs school will reciprocate on play dates. Maybe its other people who need the 'label' to help them be brave! And I love the mood switch on DS's ear! Definitely going to try that one, and Al1son's secret signal. Thank you lovely mumsnetters for being there. Better go now - obviously had too big a glass of wine...

Got the formal written diagnosis, psychologist's and paediatrician's report, today, complete with comments from ds's teacher . I have always hated reading about my ds in this way - focusing on his oddities, with his strengths (and general cuteness) as a bit of a sideline (although some of his strengths were in there, largely to point out that he couldn't make best use of them without extra support). Still, some of the stuff in there is already out of date, as he does have a friend, now, and is interacting more in the classroom . Hoping all this will result in effective help!!!!!

ps TeaTime - your ds sounds a bit like my ds1. Ds1 also attracts quite a few girl "mother hens"! He will happily sit through something at the theatre, now (although some of the time looks a bit bemused), but I remember the first ever time we took him to a pantomime. He bravely survived the first half, albeit it was clearly not making any sense to him whatsoever, then had a complete meltdown in the interval when he realised he wasn't supposed to leave, yet. Obviously, we did leave!... These days he quite looks forward to the annually repeated jokes... He is also obsessed with time - much reference made to it in his imaginative stories, which makes it look out of place, as most people aren't that interested in the precise time something happened in a fairytale... And sparking his imagination with the idea of on/off switches for behaviour works with him, too, particularly as a way of stopping some OCD-like behaviours from gaining hold.

Hi don't know if any of you will read this now as not been on for a while for various reasons but wanted to say a BIG BIG thank you to all who have contributed. it makes such a difference to know you are not alone and I have been able to draw many parallels with your anecdotal remarks :)
Ds is doing Ok I have been reading Attwood book which IS very helpful. He has good days and bad but I am getting better at dealing with him which needed to do. I now feel very guilty for all the times I lost it with him before we knew he had difficulties.

Oliviaah , we went through both school and GP he had couple of ed psych. Observations which were inconclusive so we took matters into our own hands and went to GP. We were, eventually, referred to an assessment clinic.

Rabbit stew - it IS horrible reading all the negative comments of professionals, and hard to be subjective cbut in the long run it does definitely help - knowledge is power and all that! Our situation and my stress levels have definitely improved since finding out.

Let me know if you get this as know thread was a while ago.
Thanks again

I read your thread rainbows and just wanted to say its good to hear that you are doing OK.

I am in the same position as you, just a little bit further down the road. I would say be kind to yourself and take it all one day at a time.

Keep posting as this is a good place for help and support. People on here have said that it takes a long time to come to terms with it all, sometimes a year or more, and I think that's true.

I hope you have help for your DS at school(does he have a statement?). Also I recommend AS support groups (might take a bit of googling to find one local to you). When you have had time to get used to the dx going out and meeting others in the same position is a great comfort. In the meantime there's this board