Son with 'mild' AS - anyone else??

[Zebedee]

Hi Everyone, hope you are all well.

 

I'm confused (as always!!). My son is 5, he's been assessed for AS for a couple of years now, last assessment doc said he has so many traits that we could have dx if desired. Although we fully acknowledge this, we have decided to leave it for now as it is not affecting his schooling as yet.

 

Good idea or not??

 

Also - I KEEP going through the ol 'AS or not'?? He has long spells of having little or no synmptoms. The meltdowns have stopped (for now, maybe) and he is getting on better socially. He still finds it a little awkward sometimes around certain children but he has a couple of friends that he is fine with. His latest fascination with number plates, numbers and peoples ages remains.

he still gets frustrated too.

 

I guess my question is, he laughs alot, is happy and he has imagination.

Anyone else in the same situation as me / my son?

 

 

Hope this makes some sense!!

 

Many thanks guys, Zeb xx

 

[Jennasmum]

Your post has just made me feel so much better.

 

My daughter is 4 and had only been diagnoised for about 4 weeks. She has what i call good days and bad days, on the good days (like sunday) she will have no issues and be ok with everything, interact with others, however the interaction isnt great, but its enough for people not to notice. then she will have awful days like yesterday and today, where nothing is right and she cant cope and lashes out at me and her dad to the point where i have sat in tears wondering if its all my fault.

 

On the good days i think is she really asd and on the bad days i know she is.

 

She laughs alot, sometimes its very inapporiate and fake, she is very happy, when things are right in her world/mind, and she has a brilliant imagination, however they imagnative play is always the same routine of play/same story lines, and if another person tries to join in or change the story she cant cope. Also her imagination can be quite literal.

 

Sorry i have rambled but my point is that your son and my daughter sound quite similar Zeb

 

xxxx

[Sally44]

Your post has just made me feel so much better.

 

My daughter is 4 and had only been diagnoised for about 4 weeks. She has what i call good days and bad days, on the good days (like sunday) she will have no issues and be ok with everything, interact with others, however the interaction isnt great, but its enough for people not to notice. then she will have awful days like yesterday and today, where nothing is right and she cant cope and lashes out at me and her dad to the point where i have sat in tears wondering if its all my fault.

 

On the good days i think is she really asd and on the bad days i know she is.

 

She laughs alot, sometimes its very inapporiate and fake, she is very happy, when things are right in her world/mind, and she has a brilliant imagination, however they imagnative play is always the same routine of play/same story lines, and if another person tries to join in or change the story she cant cope. Also her imagination can be quite literal.

 

Sorry i have rambled but my point is that your son and my daughter sound quite similar Zeb

 

xxxx

 

 

My son also likes to play alot. He was diagnosed aged 6. He is now 9+. Before his diagnosis I made a family video of us all playing. I thought it showed he was not autistic. However I actually proved the exact opposite. My son wanted to re-enact things he had already seen. So it was not imaginative play at all. It was a repetition he wanted. He expected anyone playing to automatically understand this and to say and do everything as he had seen it (usually from TV). He could not accept any deviation from the re-enactment at all. This has and still does cause him huge problems.

 

But he can play with other children. Usually 1:1 rather than any group play. He has developed some spontaneous play. But his teacher says he is still very rigid and inflexible and this can cause him to get upset, or other children to get upset with him because he will not take on board anything new.

 

I think all children obviously have good and bad days. Our children have a total lack, or a deficit in some skills. For children age around 5 those are probably just becoming apparent - especially in birthday party scenarios. As our children get older the difference can become much more obvious. These skills do not occur and mature naturally. For our children they need to be taught them and the purpose of them. But it can be done. But even then it will not be an automatic response, it will be a response due to a learnt process.

 

Yet from my perspective my son is the most 'normal' child I have ever come across. Playdates with other children have been horrendous due to the other child. They seem to be 'devils' compared with my relatively quiet son. I remember one occasion having to just follow another child around the house trying to limit the damage. He still managed to flood my bathroom to the extent that it marked the downstairs ceiling.

 

As he left my son said "mum, I don't think I want him to come to my home again." I thought 'couldn't agree more kid!'.

[Special_talent123]

In my situation I thought having a label helped me overcome my difficulties.

 

With Laughs I just laugh because I am nervous, dont understand or for the sake of it. when someone says something and they laugh i usually laugh with them but dont know what they are on about it, i guess im just trying to fit in.

[Jennasmum]

The peadtrician noticed that when she was talking to the SALT during the joint assessment that she mentioned that something seemed 'funny' buy meant it in a strange sort of funny way, Jenna picked up the word funny and burst in to laughter, like she knew when someone says its funny she should laugh but it was really fake and inapporiate.

[Sammysnake]

I've always known there was something going on with my daughter but it was so mild I guess that other people couldn't see it. Besides, she's fine at home because I know how to create a safe environment for her and have always acted as a kind of translator of the world for her even before we got the diagnosis. At age 5 the paediatrician missed it and school felt her difficulties were still within the normal levels for a child of her age. As she's gotten older the issues have become more apparant though so by the end of Year 3 and now in Year 4 interventions, particularly friendship groups and relaxation techniques are being employed and it was suggested we go back to the paediatrician who gave us the diagnosis.

 

One example of the change I have seen in her is in play with other children. There is a small green outside our house and she used to play out there with two kids from over the road. About 18 months ago she started to come in a lot earlier from these play times and have more tears. I would try to explain to her how to sort out what had gone wrong in the play, give her some scripts and strategies and send her out again but eventually she began withdrawing from her friends to the extent that even if they called for her she wouldn't go out. I did some sneaky observing and worked out that the group had grown from two others to about five and now my daughter couldn't control the play. She used to be able to organise the others into Pokemon battles but now they wanted to talk and play things she didn't want to and she couldn't cope. Also, a younger girl joined the group who knew just how to push my daughter's buttons to make her upset and understood how to manipulate the other children into making her feel excluded. Things like purposely offering a sweet to everyone except her or inviting everyone to see her kitten except my daughter.

 

My point is, as the other children mature and develop more complex social skills, the gap can appear wider with our kids. My daughter's issues are very mild compared with much of what I read on this forum but if it upsets her and makes her feel unsure and vulnerable then it's very important to me. School are really pleased to have a diagnosis as they know what sort of things to look out for and what strategies to investigate. It also gives us a better chance of getting some support at Secondary school. I've got another appointment with the Paediatrician in September and a friend told me we will now probably have them fairly regularly so that my daughter's progress can be monitored and there will be advice available as soon as other issues arise in the future. I find that comforting.

 

I'm glad in some ways that the diagnosis came a little later as my daughter was old enough to understand it and be very relieved to have it. She had felt at odds with the world and now has a reason for it and knows there is a bank of adults who really care about her and are going to do what they can to help make things better and to teach her appropriately. Having said that, if I hadn't already suspected AS, been researching it and using the support strategies I felt appropriate, I know she would be an unhappy little girl right now other than the happy, funny and loving individual she is when she doesn't have to interact with lots of other children ( )

[justine1]

Hi

I always thought Sam was "mild" AS but now I dont think so.I guess its because he only got his diagnosis in December 2009 age 6,when I heard autism I just assumed it was "rainmain" (as most do)so I thought he must be mild as he is'nt at that "level."

 

However,I think mild is an understatement.He is very obviously autistic,even on his good days.His "bad" days at home consist of him crying mostly or just sitting in a corner doing nothing.At school(until a month ago) he was quite physical,but with help he is no longer that way.On good days,yes,I sometimes feel like he appears like any other child but even then he has all his tics and stimming.So I would never doubt he has AS.

 

I think if your son has it you need it to be in writing,if not for now but when he is an adult,there are a few adults on here who will tell you how are it is to get a diagnosis later on.You can get help from school without a diagnosis but again it helps so much more,my sons school couldnt even get an ed psych in without an official diagnosis. So you never know.

 

Again,my son was "okay" at school until a year ago and things went from bad to worse in a matter of mths.He never hit out but because there was no support he regressed badly and thought hitting out was his only way of getting people to listen(of course he was excluded three times) so by having everything in place early on it can help him in the future when he may need help.By the way my son does just fine academically,average to above in ssome areas(like reading) so its not just about acaedemic achievement.For my son its mostly SOCIAL interaction and boudaries.

[Rosie M]

Hi, My son who is 9 was dx last week with AS. Although I would consider him a mild case I thought it better to be diagnosed as he sometimes takes terrible temper tantrums in class if things don't go his way. His Principal agreed and advised us to seek the diagnosis so that when he changes school in a few years time it will be there in writing so can give a reason for his outbursts. Awaiting his report. Will make interesting reading.

Hope that helps.

[bettyhen]

My own son has normal traits too but then something happens and I realise that he really is on the spectrum. For instance, when they changed the lining up system at school, he couldn't cope at all.

 

As far as having an official diagnosis is concerned, I think it's vital. I used to work in Exclusions for a Local Authority and a diagnosis means that an exclusion is less likely in the future because the school has to take the diagnosis into account. This doesn't mean your child can't be excluded but it is helpful. It will move up to School Action Plus and will mean that they have to have an IEP. Also, as some other posters have said, it explains why your child reacts so differently from others. My son's school still persists in believing that it's a maturity issue and that he'll settle in the end and be able to cope better but they can't take that approach because of his diagnosis. Also, you will have access to the ASD support team. The one from our LA came in and observed my son and gave the teacher tips and made it clear that planning for his ASD will eradicate many problems.

 

Good luck.

[Zebedee]

Hey All,

 

Thanks so much for all your replies and advice. We had visit with consultant last week who said she says he does have AS but will leave diagnosis for now as he isn't struggling at school. I guess it may all change when he reaches year 1 and 2. Everything about his characteristics seem so clear now we've been told he has it. He's just our little gem and I wouldn't change him for the world. Love you, little man.

 

Thanks again, it's really helped. Next app 6 months.

 

Zeb xx

[Beebee]

I've always known there was something going on with my daughter but it was so mild I guess that other people couldn't see it. Besides, she's fine at home because I know how to create a safe environment for her and have always acted as a kind of translator of the world for her even before we got the diagnosis. At age 5 the paediatrician missed it and school felt her difficulties were still within the normal levels for a child of her age. As she's gotten older the issues have become more apparant though so by the end of Year 3 and now in Year 4 interventions, particularly friendship groups and relaxation techniques are being employed and it was suggested we go back to the paediatrician who gave us the diagnosis.

 

One example of the change I have seen in her is in play with other children. There is a small green outside our house and she used to play out there with two kids from over the road. About 18 months ago she started to come in a lot earlier from these play times and have more tears. I would try to explain to her how to sort out what had gone wrong in the play, give her some scripts and strategies and send her out again but eventually she began withdrawing from her friends to the extent that even if they called for her she wouldn't go out. I did some sneaky observing and worked out that the group had grown from two others to about five and now my daughter couldn't control the play. She used to be able to organise the others into Pokemon battles but now they wanted to talk and play things she didn't want to and she couldn't cope. Also, a younger girl joined the group who knew just how to push my daughter's buttons to make her upset and understood how to manipulate the other children into making her feel excluded. Things like purposely offering a sweet to everyone except her or inviting everyone to see her kitten except my daughter.

 

My point is, as the other children mature and develop more complex social skills, the gap can appear wider with our kids. My daughter's issues are very mild compared with much of what I read on this forum but if it upsets her and makes her feel unsure and vulnerable then it's very important to me. School are really pleased to have a diagnosis as they know what sort of things to look out for and what strategies to investigate. It also gives us a better chance of getting some support at Secondary school. I've got another appointment with the Paediatrician in September and a friend told me we will now probably have them fairly regularly so that my daughter's progress can be monitored and there will be advice available as soon as other issues arise in the future. I find that comforting.

 

I'm glad in some ways that the diagnosis came a little later as my daughter was old enough to understand it and be very relieved to have it. She had felt at odds with the world and now has a reason for it and knows there is a bank of adults who really care about her and are going to do what they can to help make things better and to teach her appropriately. Having said that, if I hadn't already suspected AS, been researching it and using the support strategies I felt appropriate, I know she would be an unhappy little girl right now other than the happy, funny and loving individual she is when she doesn't have to interact with lots of other children ( <img src="http://www.asd-forum.org.uk/forum/public/style_emoticons/<#EMO_DIR#>/smile.gif" style="vertical-align:middle" emoid="" border="0" alt="smile.gif" /> <img src="style_emoticons/<#EMO_DIR#>/tearful.gif" style="vertical-align:middle" emoid="" border="0" alt="tearful.gif" /> )

[Beebee]

Hi Sammysnake.

Your post could have been written by myself.

I too have always thought that my son was a little different if not quirky.! As a small child he jst about managed and i think disguised his difficulties well. This i would say was possibly in part, down to the other children accomodating his little ways.! As he has got older, the gap between he and his peers has grown. He still wants to wrestle, play 'dens' or pokemon...whereas his peers are more interested in earning money through 'saturday' jobs and who's going out with who.!! His recent diagnosis has meant that he now knows why his friends don't share the same interests as he does. J's problems are mild i think compared to others and are mainly centred around social and communication issues. I spent many years questioning the thoughts in my head....did he have 'aspergers' or was i imagining things as he too had days where he seemed fine. I waited and waited for his primary school to 'question' his behaviour/lack of social skills etc, but that never came...so i decided that when he moved up to secondary school i would voice my concerns with them. I have to say that my son is now in year 11 and his school have been the most unhelpful they could possibly be. One member of staff(unqualified) observed my son and then told the SENCO, that she could see no obvious 'Asperger' traits and on the basis of that, the school ignored all my requests for extra support and help. In the end i had to get a referal to 'CAMHS' via our GP, and so his official diagnosis was made in July. He's now 15 and his diagnosis has been positive for my son in helping him to understand why he thinks differently. His diagnosis may not help much at this late stage with his school(although they are now putting in extra measures to help him) but i like to think that for the sake of his sanity, the knowledge of his diagnosis will help him to attempt to deal with any 'problems' that may crop up as an adult in a more informed way. :0)

[Mandapanda]

Hey All,

 

Thanks so much for all your replies and advice. We had visit with consultant last week who said she says he does have AS but will leave diagnosis for now as he isn't struggling at school. I guess it may all change when he reaches year 1 and 2. Everything about his characteristics seem so clear now we've been told he has it. He's just our little gem and I wouldn't change him for the world. Love you, little man.

 

Thanks again, it's really helped. Next app 6 months.

 

Zeb xx

 

Hi Zeb

 

Can't personally see why diagnosis should not be given because he's 'not struggling at school'. If he has it, he has it. In my experience I would say get it in writing now, whilst you can. If there's a change in funding, structure or staffing of the department you may find it harder to access diagnosis when you 'need' it. My eldest was diagnosed simply and easily. When my youngest started having major probs, CAMHs said they didn't have anyone who could assess or diagnose him - even though they have a Consultant Psychiatrist.

[smiley1590]

he obsession with anything do with numbers so fit A.S critia e.g numberplates dates are common examples of someone with A.S classic case .....

[smiley1590]

like everyone else has veried that the earlier the official diagnosis the better the outcome make less painful hamrful to you and him .... save alot heartache worry .... later on down line be harder to fight back so do it now while you can see obvious signs you know your son leave it for future can be full regrets and guilt of decision which turned bad and wrong and one which turn back and make right so make right steps now towards support help

 

good luck

 

i was officially diagnosed early teens as trust me want to avoid getting to that late point if possible saves so much despair misery .....

 

 

XKLX