Hi all

[Mumof4]

Hi,

 

We are waiting for an appointment for an assesment for our 13 year old son, at the moment I am feelings little scared of the process and of the outcome

My son has always had many of the symptoms of asd, and as been seen twice by a doc, 1st time he was around 2years old, and doc said it was too early to tell, the second time was about 4 years ago he was seen by the school nurse, who chatted with him for approx 10 mins and said because he makes eye contact he doesn't have asd, we tried our best to manage after this, but as he has become a teenager, the meltdowns were changing and he was becomming verbally and occasionally physically aggressive, so we decided to seek help for him, the high school nurse visited last week and after a very long discussion with us ( my son was not present) , she agreed that it sounded like he has some autisic tendencies and would look to refer him, part of the problem is he can control himself at school and sometimes will go off like a coiled spring at home ( does anyone else's child control themselves in different situations ? )

At the moment I am concerned getting a diagnosis at such a late stage could make matters worse.

Some of his habits and behaviour has Improvedwith age, and some has got worse, my son is already saying he won't go to the appointment, even though I have reassured him that we are all going to help him.

[darkshine]

Hello, I don't have children but know a little and have read a fair amount on here.

 

Although it isn't easy right now - there could be positives about the diagnosis - your son isn't too old and if he has certain difficulties, there might be things that can be put in place to help him and you as a family.

 

If that isn't something you or he would want - then I guess you could use the diagnosis as a way to work with his difficulties - so you and he understand how to best improve things. If he just has traits and doesn't get a diagnosis - understanding the traits may help you work things out in a similar way.

 

Quite a few people have said that their child sort of copes at school and then turn into hell child at home (my words not theirs lol) so maybe some of them may be able to advise on you on that - I think the general thought is that the young person uses all their everything in getting through the day, bottling stuff up - and they kinda explode at home where they feel they can do so - of course this brings up other issues as you don't want a violent uncontrollable teen on your hands either - again - there's people who may be able to advise on that.

 

I was diagnosed at 30 and feel that as things stand right now, that it was a little too late - I don't think 13 is too late - but it is a awkward time for some and the last thing they want is confirmation that they really are different - maybe finding a positive way of looking at this would be good for your son... (some people will laugh at that because I am quite often negative - but as a result I know how important positivity is when you are younger).

 

Best

 

Darkshine

[Mumof4]

Thank you for your encouraging reply, it's nice to know we are not alone, having spoken to my son again about the up and coming appointment, he said he wants to ask me questions about it but doesn't know how to say it, he also said he feels like he's on a rollercoaster sometimes and feels jerky, I don't know what he means by this , I don't know if he meant his thoughts are jerky or his body feels like that, we just want to understand as much as we can in order to help him,

I'm glad you found the courage to get a diagnosis, which can't have been easy as you were an adult, but maybe the diagnosis came as a relief to you ? .

I don't want my son thinking he's just a naughty awkward child, if he can't help the way he is, I don't know if his traumatic birth has anything to do with his difficulties ( forceps delivery) his head was very marked especially across his forehead.

I know some people will say that a traumatic birth has nothing to do with asd or other development disorders, but it can't do a baby any good being born In such a way, in my experience, I have 4 boys my eldest has asd tendencies and he was a forceps delivery and then my 13 year old who was also a forceps delivery, my two youngest had smooth births and they have no difficulties .

 

 

[Dijac]

Hi Mum of 4,

 

My son is almost 13, and we have just got him diagnosed in April. He was always a bit different but it became really noticeable with adolescence. Like your son, ours seemed to manage school, and his teachers said what a lovely boy he was - then he got home.... And he'd let it all out. I agree with Darkshine that it takes all his energy to behave 'normally' in public, then he has to let it out when he is on safe ground. We have found that letting him come home for lunch helps - he can have some quiet time and is less wound up in the evening - (easier here in France when they get 2 hours for lunchtime).

 

Is your son into computer - my son is obsessed with this, and he looked up AS on his own - it seemed to help him when he discovered some famous, sucessful people are supposed to have AS, especailly when he read the inventor of Pokemon is allegedly an Aspie.

 

I have joined a support group but Will refuses to come. The other teenagers there seem to enjoy speaking to each other, but Will came once and said he wasn't like them. We have a meeting this week, so I am hoping to get him to try again, but I am not sure he will. One of the other Mum's there said that this age was the worst, and that her son had a lot less meltdowns once he got into his upper teens.

 

We are still coming to grips with things, and still have some very bad days, but in understanding some of his traits, we can at least prepare ourselves and him when we know a stressful event is coming up.

 

Best Wishes, Diane

[Mumof4]

Hi dianne,

Thank you your reply, how did your son react to the initial diagnosis ? , I am worried about how my son will take the news if he were to be diagnosed, my son is very into computers, he likes writing lists on his, his birthday is coming up in August and he's wrote his birthday list dozens of times, he writes down what he would like for his birthday and the prices too, if my son were to be diagnosed I would also think its a good idea to bring him home for lunch, , it's great you have 2 hours, we an hour but live very close to school so think we would have enough time, I think that would help break the day up for him.

The school nurse telephoned today and is coming to our house on Thursday to meet my son, I am hoping this will prepare him for his real appointment with the paediatrician .

 

[darkshine]

Thank you for your encouraging reply, it's nice to know we are not alone, having spoken to my son again about the up and coming appointment, he said he wants to ask me questions about it but doesn't know how to say it, he also said he feels like he's on a rollercoaster sometimes and feels jerky, I don't know what he means by this , I don't know if he meant his thoughts are jerky or his body feels like that, we just want to understand as much as we can in order to help him,

I'm glad you found the courage to get a diagnosis, which can't have been easy as you were an adult, but maybe the diagnosis came as a relief to you ? .

I don't want my son thinking he's just a naughty awkward child, if he can't help the way he is, I don't know if his traumatic birth has anything to do with his difficulties ( forceps delivery) his head was very marked especially across his forehead.

I know some people will say that a traumatic birth has nothing to do with asd or other development disorders, but it can't do a baby any good being born In such a way, in my experience, I have 4 boys my eldest has asd tendencies and he was a forceps delivery and then my 13 year old who was also a forceps delivery, my two youngest had smooth births and they have no difficulties .

 

Hi

 

I think that there's a hell of a lot for you (and your son) to learn - but I sort of think that you should see if he gets a diagnosis before looking in to things too much.

 

In the meantime, have you checked out the NAS website?

 

http://www.autism.org.uk/

 

In the middle (ish) of the page are the "top content shortcuts" and there is a fair amount of info to read on the site elsewhere too.

 

Feeling jerky can happen in the body and mind - I understand the rollercoaster metaphor too - my whole life has had aspects of that.

 

If your son does end up with a diagnosis then you both can learn more and he can learn the vocabulary to explain himself a bit better maybe (I found that once I read a bunch of stuff that it gave me the words that I had been missing - although I do still struggle with explaining certain thoughts and emotions - at least I can describe certain things)

 

Not sure about the forceps thing - all I can say is that you shouldn't blame yourself or anyone else - there's no point wasting time looking for why's - it is better to use your time on what the future will hold.

 

I didn't actually seek out my diagnosis - I'm in a bit of an adult minority with that one lol - I was very angry when I got diagnosed - that was over a year ago now - and in all honesty I don't feel relieved even now - but - again - I am in a minority - a lot of people seem relieved because they find out it isn't their fault and stuff.

 

Of course you don't want your son to feel like he's a naughty awkward lad - and if he is diagnosed you can help him understand better - but I believe that "we" all can learn and improve - just because "we" get a diagnosis of AS (asperger's syndrome) doesn't mean that its an excuse - its just a label really and it should be used to better ourselves in light of better understanding. It provides a more useful explanation of "why" and from that point things can be worked out for the future.

 

Although I have not been overly successful in life I truly believe that if I'd been diagnosed earlier in life I could have gotten help - plenty of people end up with pretty good lives and there's no reason why this can't happen for your son - it just might take him a little longer - and I think that's ok - as long as he gets there at some point

 

One of the books I read was by Tony Attwood - The Complete Guide to Aspergers Syndrome - it was worth reading and I would definitely recommend it to most people who are interested in knowing more - a fair amount of it is about kids and teens and so could well provide parent's with something to explain their kid's behaviour and thoughts and stuff. And by doing so open up ways for understanding. It says in there that on average kids/teens and young adults are about 3 years behind their peers on a developmental level - this was very true for me - and is still true to an extent - and its things like that - that can help other people to understand - it also might explain for some people why on one level their kid understands complex things and then on another can suddenly react like a much younger child or not understand certain social concepts and stuff.

[trekster]

i can make eye contact and im still autistic.

 

i would say getting a diagnosis and an appropriate statement for him will help rather than hinder him.

i was diagnosed age 16 and i could have done with the seperate room for my exams before then.

 

i would say to your son "we are going to ask the doctor how you think so we can help you" or something similiar. Maybe he is scared because he knows hes different from other children.

 

There are some really good books on Aspergers/ASD and adolescence. i highly recommend you search for some. If you can join an autism strategy for children in your area you could help loads of other kids. Better diagnosis is one of the main aims.

 

There might also be a NAS branch in your area which are run by volunteers. i am the secretary for the North Somerset Branch.

[trekster]

Darkshine you reminded me of an excellent book, "freeks geeks and asperger syndrome" it is aimed at teenager autistics :-)

[darkshine]

I've heard a few people mention that one - is it by Luke Jackson or something like that? I might have to pick it up and have a look - I really wanted to get other things right in my mind before I read anything, but maybe I should be looking at a couple of books one day soon