Aspergers diagnosis for ds 4.3- please tell me stories about good progress!

[MrsLukaKovac]

DS 4.3, at nursery school, just diagnosed with Aspergers. He has always had social and sensory problems at nursery and shown only very slow progress. His vocab and talking style is amazing and Ed Phyc gave him 92% for verbal IQ.

He has lots of the symptoms but not all (i.e he doesn't get too stressed out by chnage in routine, although he is very inflexible in other ways like dictating play). He has sensory issues that make him a bit physical with other children and he is very literal, doesn't get teasing or sarcasm but understands if you explain (although doesn't find it funny).

Anyway, I have scared myself stupid reading anything I can find on the internet, and am now finding it hard to be positive. I am imagining him as totallly isolated in the school playground whn he starts in september, bullies, no friends, low self esteem etc etc.

Please tell me encouraging stories about how your AS child has progressed socially with the right help!

DH also in denial and refusing to belive it. Any advice on bringing him round much appreciated! Feeling pretty low right now, like ds's future so uncertain and feel disempowered to help him.

Sorry you've spooked yourself on the internet, it is easy to get a bit bogged down with the negatives. It isn't all doom and gloom tho, my ds has ASD not Aspergers so not quite the same but he is quite a social little chap, he has a group of friends at school that he usually gravitates towards and plays with ds2 and friends when they are around - he never strikes me as lonely or isolated. When he was younger he had a bad patch at school but that was more to do with the school not including him in things which made him very frustrated - he changed school and is now doing really well in all areas. It's hard to tell how things will pan out but now you know what you are dealing with you can look out for danger signs like bullying. I find for me focusing on the positive things helps and like riven I can imagine my ds having some kind of geeky career (again like his dad!).

My ds, now 9, had a dreadful time in his first primary school because they simply didn't understand Asperger's at all. It didn't help that he didn't get his dx till the end of Y3 but even so, the problems were there, they just didn't know how to deal with them and he was treated for four years as 'the naughty boy'. However, you asked for positive stories and ours has turned out to be just that. I moved him to a different school in September, another mainstream but with an ASD unit attached, though ds is taught fully in mainstream. Because of the unit and it's aims to develop its children so that they can enter mainstream, all the staff have a high level of awareness and that's made a massive difference. They don't actually DO much with ds but the calm and supportive environment, plus smaller class sizes, means that he's more settled in the evenings and responsive to the work I do with him at home. He's very happy there and has lots of friends - something I never thought I'd be able to say.

It's hard to get school right - many parents will tell you they've had difficulties with their relationships with teachers - but keep at them and share information, have regular chats and try to get a home-school communication book if they'll give one. If, like me, you find yourself dealing with a school which refuses to cooperate and meet your child's needs, move him. There's no point in fighting them because often it's an attitude that you can't change. Go somewhere where he'll be nurtured instead.

Look into social activities outside of school as well - your boy will need lots of opportunities to make friends and not just rely on those he makes at school. Find out if there are any autism charities in your area and what provision they have for social groups. Ds goes to a monthly social group and they go out bowling, kite-flying, dry sledging etc, he's made some lovely friends and is developing well.

One word of caution though - although your boy will make progress over the years it's unlikely to be a smooth development, there will be peaks and troughs when he's doing really well then times when he's really struggling. Symptoms will come and go depending on how anxious and stressed he is, often you won't know the source but will have to deal with the aftermath. My ds started off with few obvious symptoms but has become more stereotypical as years have passed, but I now know it's related to his emotional levels and have learned how to manage it. Eg, he always had great eye contact but in the last couple of years he's struggled to look at people when he's upset. But don't worry if something unexpected crops up, it's all part of his autism and you can find ways to deal with it.

Essentially it's a massive learning curve and not straightforward. Good luck!

Hi,

Has your DS had one to one at nursery and has anyone mentioned you applying for a Statement?.

With regards to his school life I would also suggest YOU now apply for a Statement of Educational Needs from your LEA. Do NOT leave this till he starts primary, do it now!!. The sooner such a document is in place the better although you will likely have to fight long and hard to get this. A Statement is a legally binding document (unlike things like School Action plus which is not and is also limited in support). It will outline your DS's difficulties along with strategies to help his educational/social needs. He will be given a set number of hours of support per week. No statement = no support of any real value.

Your DH needs to snap out of the denial state; being in denial helps no-one ultimately and you're carrying all of this currently on your shoulders. That is not fair on you. He needs to realise that your son needs full support from both of you.
Perhaps showing your DH information from and talking to the NAS (National Autistic Society) will help him come to terms with his son's difficulties. After all he is still your delightful son regardless of any thing else.

HTH and good luck

Attila
IPSEA are good at the whole minefield that can be the statementing process www.ipsea.org.uk and there are model letters you can use. A statement can take six months to set up so get the ball rolling on this asap!!.

Mrslucakovac like the other s have said it is easy to get bogged down and overwhelmed by all the stuff out there and you wonder how they will ever cope.Ds1 was diagnosed last year and is now 7 and a half.In that year we as parents have learned so much about aspergers so we are much better at coping with and understanding him and he also has grown up as well making things easier.We have obviously struggled A LOT with his behaviour at times but have been calm and clear with the rules and have carried out any threats we have made so he knows where the boundaries are and these do not change.As aresult he is much more managable and knows when to stop pushing.At school he has learned how to behave although that did take a bit of time.In reception he was pushing children over in the playground and was quite happy to continue with his activities even when the teacher asked him to stop.It was obvious he didnt instinctively know right from wrong.However thanks to his wonderful reception teacher he worked out the correct way to behave and is now apparantly popular at school(altho we dont see that side at home!!) Only this morning as we walked to the school bus I thought how well things were going for him socially as 2 of his bus mates started calling out to him to play as soon as they saw him which was great.
It is a hard strugglefor as children but you can do so much to help them learn how to behave aand also i think we tend to look at things from our own perspective and would hate to be alone in the playground but i know my ds enjoys sitting on his own on the bus at times and hates being with others so we mustnt forget that they experience things differently.The good thing about getting a diagnosis so early for your ds is that you have got so much time to prepare him and from what i have been told by many of the professionals dealing with my ds is the earlier the diagnosis the better chance they have of doing ok.Good luck..

Ds2 (5) was dx'ed with AS a couple of years ago. He started in Reception last September and tbh I had similar concerns to yours. Ds2 has sensory issues and has no concept of personal space so tends to crowd other people.

There have been a few issues and meltdowns along the way but it's mostly been a positive experience. Ds2 seems to be popular and even has his own little gang. A couple of the other mothers have told me how their boys have begged to be allowed to have a particular toy "because has got one". At this age being physical, having no sense of danger and bossing around directing the other children seem to be positive attributes in the playground.

Ds1 (8) has ASD and has a very different personality to his brother. He used to prefer his own company in the playground but this has changed over the past year or two. He has 2 'best' friends at school. One is a girl who seems to enjoy mothering him. The other is a boy who is loud and boisterous. He's helped to bring ds1 out of his shell a bit, and in return ds1 can be a calming influence on the other boy. There are also other children he plays with in the playground. Sometimes he prefers to be alone and the other children seem to respect that.

As Karen says, it's not always straightforward progress. It can be a bit of a rollercoaster at times. Ds2 can sometimes lurch from one extreme to another. There are days when his teacher tells me that he's had a major meltdown over something seemingly trivial. There are also days when he has done so well that his teacher has made a point of coming over to show me ds2's work or to tell me that ds2 has been given an award for something.

Good point about social groups riven, it's worth acknowledging that some Aspies crave social contact while others, like your son, aren't so keen. Often (IME) it's the nature of the group rather than the activity, sometimes the coordinator/instructor and their level of awareness. I just think it's worth mentioning to MrsLK that you have to look around for the right social group and often the autism charities have the best provision. There's no doubt that a child with opportunities to learn and develop social skills will do better as an adult.

Really good advice so far.

I remember school vividly, even from the youngest of ages and having to think back all those years. When you can't 'see' people, it's hell trying to work out what the social rules are. We can't switch attention between different people very fast, so by the time someone's said or done something and then someone else does, we've completely lost what's going on.

If you can find a school that really understands what the world is like for us, welcomes us, and finds ways to take some of the social pressure off us, it's so much easier.

Your child is a specialist who is 'blind' to people. They're always going to benefit from a world that respects those differences and sees what they can do well. You'll probably find he can see things you cannot, hear things you cannot, and has other skills that you simply cannot imagine because you don't have the ability to do what he does. He'll be more determined than the others, more focused, perhaps more technical. Those are all things that can be excellent in school and later life, if the school can find ways to 'keep the noise down' - in other words, let him have a quiet space in which to plan and feel his way through the day, and enough careful training that he can learn what all the social signals mean (and there are hundreds of social signals and combinations of signals to learn for us, whereas everyone else gets automatic bits of the brain to do that for them.)

As for DH, the knack is to get him to be proud of what your son can do, and who he is. He's not a failure, he's not broken, he's different and that can be a huge advantage in some things in life.

Einstein, Leonardo da Vinci, Stephen Wiltshire, Bill Gates - all people with an ASD (by specialist opinion). Imagine their parents being disappointed, if you can. That's what's sometimes possible. Not always, of course. Whatever your lad's abilities, he's still your lovely lad. Be proud.

www.stephenwiltshire.co.uk/

Ds1 and I are both on the spectrum and as he's still only 4 himself I'll write about my progress.
When I was very young, pre school age, my mum was known throughout the neighbourhood as poor Mrs X because I was such hard work. She would take me to playgroup and I'd just race round and round the room, looking to escape out of any door I could find. I would frequently run away from her. I was very hyperactive, my parents would try to get me to nap in the afternoons just so they could have a break. I rarely talked to anyone other than my mum and even then rarely initiated talking.
When I was at primary school I talked to more people and played games like tag and chase with other children for a few years. I handflapped, talked too fast and talked to adults through my mum. I still rarely initiated. I did not pick up on what others were seeing or feeling. I know it's a cliche, but for a lot of the time I was so wrapped in in my own world that I wasn't aware of what others were doing around me.
When I got to the last year of primary school the gap between me and others my age became too obvious. I had absolutely no concept about joining in with other girls talking, could not approach others, could still rarely initiate. I became very withdrawn. Think of all the typical ways that teenage girls interact, socialise with each other. Things like talking, phoning someone up for a chat, going into town, comparing clothes and makeup etc. I did none of them. My social life amounted to going to the Youth Club once a week, sitting on my own and only talking to people if they approached me. I still harbour feelings of dislike towards the YGL who decided to loudly humiliate me during an improvisation game we all had to play . I never had a date, never told any lad that I liked him.
In a way I got through thingsto some extent because I had absolutely no comprehension that I should be trying to be like others. Now I'm 33 how I am and my personality and interests are accepted by most people, nobody bats an eyelid at me watching Dr Who for the plots for example. But as a teenager, if I'd have thought that I should try and be like others my age and then struggled to emulate them, I think I'd have been more upset and miserable. I was also very very naive and vulnerable when growing up, the term "streetwise" could have been used as an antithesis to me.
I have a very very small sphere of people that I can talk to and feel comfortable with in real life and a lot of those I hardly see. People presume that because I'm married that means no problems socially, but DH is only the second person I've dated and the first lasted only 9 weeks. After being with him for over 14 years I still refer to his dad as "you" or "L's dad". I still find myself talking to people through my husband, as opposed to my mum when I was younger. This doesn't happen all the time, but it does happen.
If I practise for ages in my head I can now initiate more things, but it's still a struggle to start off. I can sound very casual about something I've been rehearsing for what could be hours.
If this all sounds rather gloomy it's not meant to. I've got understanding and support and am social enough to meet people, talk with them and take an interest in things. Though I shoudl point out I've still never phoned up someone for a chat. If TotalChaos comes on this thread she could (if she wanted) confirm that she's met me and that unless you knew the signs to look for you would not think I was different from "typical" people.

MrsL - my dd is 4.8 and is being assessed at the moment although likely to be aspergers and maybe adhd as well. She is an excelelnt reader and vocab is brilliant. Sounds very similar to your ds espeically in terms of social and sensory issues and also not the problems with change but dictates play etc and she is due to start school in September. WE have been very lucky in that she as a teaching assistant full time when she goes and this is without a statement. Has your ds got any provision when he goes? Have you discussed situation with his new school. i know some days i just feel that things are quite desperate for her and she will not be happy at school etc but i also know from reading on here that things can be ok. I think its one day at a time, be informed and just try and read our children as best we can and do what's right for them no matter what anyone else says.

Riven - i have the same problem re screaming and carrying to preschool (alkthough she does this on the way home too!!!!) I too would consider home ed if she's not benefiting from being in school and it makes her so unhappy although i may have to do something for my sanity if i home ed!!!!

We think my DD is AS too, although only at the close to NT end of the spectrum (if that makes sense??? She has speech delay where your son is lacking the change issues iyswim)

Her first year has gone quite well.

The other children tend to see her as assertive rather than controlling atm. I don't know how long that will last for though.

School have been fabulous - they just asked what her issue were, what the outcome was likely to be of the issues cropping up, and what they should do to avoid it/handle it as it occurs. So far it hasn't been an issue, but she is a completely different child at school it seems

The only thing we are getting lately is "nobody wanted to play with me" - but the TA has been observing and it seems to be more "nobody wanted to play my game"

Watching my son socially, the main thing that has helped is two girls in his year -- the girls seem to have less of the boy 'pack mentality' and have always taken him for who he is. DS is 11 now and at secondary. His leaving report from primary school read 'XX has a small but constant group of close friends, and I have never known there to be a dispute between them.'

Can't get much more positive than that, really!

thanks everyone, I get the feeling that being AS gives you a real strength of character. knat yes that sounds like a familiar scenario.

The SENCO said to me today that I have to try and get my head around the fact that ds's 'happy' is going to be different to my idea of what ds's 'happy' should/ought to be. I suppose that is true, I'm feeling sad for all the things that will be hard for him (teenage socialising etc) but if it doesn't realy occur to him to want those things then that's something I need to get comfortable with.

His primary school is a new and small school who have already seen one boy with AS through until his final year. Apparently they are very clued up and have already been talking to ds's nursery (within one week!) about putting together and individual eduaction plan. They are coming into see ds at nursery before the end of term. I feel positive they are going to be supportive.

I suppose I'm secretly hoping it will all resolve itself and go away. One minute I feel spured into the action, the next totally numb to it.

Thanks everyone

Bullet123, so much of what you wrote sounds like me . Except that I turned into a rather extrovert Aspie (don't ask me how or why, I've no idea). I read women's magazines about fashion, celebrities, people who've slept with about 20 men in their lives, and think "oh my - what on earth is the meaning of all of this??!". Give me a nice car or science magazine or an episode of Dr Who and I'm absolutely fine.

What really helped me, thinking about it, is what you describe - the practising something over and over again in my head until I'm really used to it. Even now if it's a conversation of a sort I haven't had before, I'll have to prepare what to say well in advance, and go over it again and again in my mind, working out what they might say back and what I'd have to say then. If it doesn't go to plan, I know enough emergency sentences to get through it, but the shock is extraordinary and I often get totally exhausted afterwards and need time out to "reload". It makes business charity and school governor life a bit of a challenge sometimes, but I've always been really careful to choose careers and situations where I know what to do and which play to my strengths (computers, buildings, really well organised meetings). I simply cannot think fast enough in any social situation. Put me outside of my 'comfort zone' and I'm as naive and vulnerable as an un-streetwise eight year old. I have to plan a subtle support network for each occasion.

I've built up a network of friends through sheer determination, learning body language and social niceties from books, and practising them over and over again, year after year. Because I'm extrovert, it's something I've wanted to do. Other aspies are quieter and happier not giving themself social 'mountains' to climb. Many friends are friendships I've made in the last few years, so I suspect it's a skill that gets easier with age and we only achieve our best in the second half of life?

It might seem very improbable that a youngster could ever get married, have a family of their own, etc. But we often do find ways to do all of this. Our way. And we are nearly always really good adults to know, whether we know all the social rules or not.

Hi
Amber and Bullet - it is so useful to read your posts

My chap is ASD plus dyspraxia and dyslexia and other bits of stuff. He doesn't really fit any criteria in a way but I wish I had known before I scared myself witless reading a load of stuff when he was tiny that

All ASD kids are different. Just cause one has to stroke every lamppost doesn't mean that yours is going to.

Challenging behaviours when the time is right is OK so I would deliberately subvert certain things - such as going a different route to things so that routines weren't too set.

Pre rehearsing situations and possible outcomes really helps as does prewarning about ending activities, etc.

Other people get less wound up about his quirkiness than I do (I get wound up by the fact that people patronise him)

He's turned into the nicest 13 year old in the world and is brilliant at helping me in the house and garden

He sounds a bit like my ds (Aspergers, 6), who has a very close best friend, plenty of other children he plays with and his fair share of party invitations. Also, all his little sister's friends worship him!