Paediatritian Appointment

[Mum of 3]

I've been keeping a diary of things G says and does for a year now, on the advice of various people I've spoken to about his difficulties. To me, it makes for very interesting reading (well, he is my son, and I did write it myself! )

 

My problem is, I'm not sure about the dx myself (Obviously, I'm not qualified to diagnose, and don't want to either), although there is certainly alot of stuff that points towards it, which tends to be what I record in my diary. For instance, his head teacher died very suddenly a couple of weeks ago. I thought he'd be devastated as the HT was one of his only 'friends' at school, but he just wanted to know who'd look after the children at school? Part of me thinks oh-ow, AS alarm -lack of empathy, but another part thinks this is quite a normal reaction for a 5 year old. He started to get really anxious the other day at bedtime, and eventually said he was worried about dying. I'm thinking 'is this strange? shouidn't he be more worried about me or his father dying than himself? Is he egocentric? Or am I?!!!'

 

As you can see, I'm getting a bit tied up with myself about this (in fact, my flippant manner is masking my huge panic about this-it is literally driving me mad!).

 

The last Paed visit didn't go too well for us. I felt as though I was more in the spotlight than G, and everything I said was met with 'don't all children do this?' This is a different Paed, one who actually knows about ASDs, I've been told, but I think I'll just break down if I have to face that sort of attitude. The last visit, I felt as though I was being treated as though I'd come in with the diagnosis, and now I had to prove it.

This time, my instinct is to just wait and let them ask the leading questions that I can then answer honestly. The trouble with this is that if they don't ask the right leading questions, I'm going to end up trying to fit it all in: 'yes, but what about when he does this, or that, and when I say this, he says that!!!'

 

So, my question is, do I go in and give a list of bahaviours, difficulties and differences and leave it up to him? If so, how do I do this with G in the room listening to everything without him feeling I'm betraying him? (This was a problem last time, he wouldn't let me talk to him without G in the room, and I wasn't prepared to do that, so I ended up not saying some of the 'bad 'things, to save G from hearing it. i doubt he'd have let me speak anyway, as it was he did everything he knew how to bring the Appt to a close!).

Alternatively, do I 'come clean' and say that I've been researching and reading up on ASDs, and these are the areas where I feel he fits the Dx...with specific examples to back it up. If it's going to be this one, I'll need to clarify all my thoughts and write things down before I go in. You may have noticed I have a tendency to ramble .Does anyone have any ideas about how I could organise this 'evidence base', by theme, by areas for diagnosis (the 'triad of imparements'),chronologically?

 

Any and all ideas on this would be gratefully recieved. I'm really struggling at the mo, and I can't get my head around it at all, but I want to be able to pull it together for Thursday, and approach this in a 'professional' manner, without breaking down and rambling like I have been doing lately!

[wasuup]

Say you have looked at the criteria on the Internet for ASD's and you think many of the behaviours your son has matches them. You want your son to be assessed for ASD as a result.

 

Give a example of the behaviours and how it meets each criteria. Say you looked at the NAS website- theres a general list on there. Then the onus is on the professionals to assess him.

[Mum of 3]

Thanks wasuup, I'm off to the NAS site now!

[cmuir]

Hi

 

I think a diary is an excellent way of recording things. I'd like to offer a word of caution though ...

 

I too had kept a diary of things my son said and did and most professionals were accepting of this - in fact, they said it was helpful (as I thought/hoped it would be). However, during a recent meeting with CAMHS, I was told that this was an odd and very negative thing to do. I was fuming. I told them that the only way I could remember things was to write them down because so much was happening on a daily basis. In addition, you don't go to your GP to tell them that you feel great - you go there to seek help for your problems. Must confess I think the OT that said that wished she could have eaten her words as I was so angry!

 

I also think you have every right as a parent to say 'I'm no expert but I think my child shows some signs of AS because ... and then 'what do you think?'. They'll soon make their own minds up. I may sound mistrustful, but professionals don't always get it right. Our GP and HV were emphatic that my son didn't have an ASD. I reached breaking point and would phone them in tears insisting that if that wasn't it, then I wanted answers. It took me a further 1.5 years to get them to agree to refer my son to a Paed and a further 2 years to get a diagnosis. I'm a big believer in gut feeling and so best advice I can give is to persevere with this until you get some answers. Also, with regard to the diary, professionals don't have a great del of time to read lengthy documents, etc, so it would be an idea to photocopy the 'juciest' bits and post them in advance of appointments. At least that way, there's more of a chance that it'll get read.

 

I've probably sounded very negative about the whole process, but it's important to understand that no one takes giving a label lightly and it's important it's the right one. The diagnostic process is often lengthy because ASD traits often become more apparent with age and maturity. In addition, often a number of professionals are involved in the diagnostic process, hence the reason it can take so long. It's incredibly difficult to be patient when you desperately want a reason why your child behaves the way s/he does.

 

Best wishes.

 

Caroline.

[Kazzen161]

Personally, I would not start off by saying that I thought my son has ASD. I would make sure I was aware of the criteria for ASD, and make sure the information I gave the paed covered all these criteria, and then let the paed make his own mind up. He may ask at the end what you think, or if he does not mention ASD, you could then ask if he thinks he has an ASD.

 

Starting off by saying that you think he has an ASD, might make the paed think you are desperate to try and fit him into this dx.

 

Re: having your son in the room. Is it possible for you to take someone with you, who can take him out after a while, so you can talk freely (or take something that will distract your child from what you are saying). I know exactly how you feel, but most paeds/psychs seem to think it is important to have the child there while you talk. I know they need to see the child and how you interact, but it is not nice to have to pour out all the awful stuff in front of your child. Then they tell you you need to work on his self-esteem - lol!

 

If necessary, do say what you need to say even if your child is there, as otherwise you will end up coming out cross that you have not told the paed everything.

[bid]

Personally, I would not start off by saying that I thought my son has ASD. I would make sure I was aware of the criteria for ASD, and make sure the information I gave the paed covered all these criteria, and then let the paed make his own mind up. He may ask at the end what you think, or if he does not mention ASD, you could then ask if he thinks he has an ASD.

 

Starting off by saying that you think he has an ASD, might make the paed think you are desperate to try and fit him into this dx.

 

Re: having your son in the room. Is it possible for you to take someone with you, who can take him out after a while, so you can talk freely (or take something that will distract your child from what you are saying). I know exactly how you feel, but most paeds/psychs seem to think it is important to have the child there while you talk. I know they need to see the child and how you interact, but it is not nice to have to pour out all the awful stuff in front of your child. Then they tell you you need to work on his self-esteem - lol!

 

If necessary, do say what you need to say even if your child is there, as otherwise you will end up coming out cross that you have not told the paed everything.

 

I agree completely with Kazzen

 

Good luck with the appointment.

 

Bid

[Sally44]

You could say that a friend who also has a child on the spectrum brought up the similarities between your two children and that caused you to look at the NAS website. Say that you would like to know if being on the spectrum is a possibility or not. And you could offer them the information that you have collected, ie. say that you have made some notes of where you think he is showing behaviour that might be autistic, and ask if it would be useful for them to have a copy of it?

 

I did make a long list of things he could and couldn't do. But at the time I was attempting to prove that my son was not on the spectrum - now when I look back at that list, he is soooo on the spectrum it makes me smile. But anyway, back then I had a Health Visitor and a local GP telling me 'not to worry' and that 'all children do these types of things', and that if there was a real problem school would pick it up. Well they did pick it up, but that was some 2 years later.

 

This is my own opinion, but for some strange reason the parents who think their son isn't on the spectrum have the professionals falling over themselves to diagnose, and the parents who suspect an ASD are told that that is not necessarily the case. I think it might be something to do with professional egos. I even video taped my son playing with his sister to prove he could play and interact. And I was then told that actually I had recorded him playing alongside and playing rigidly and not using language to interact - apparently!!!

 

And what can make it more confusing is that some professionals appear not to like to diagnose and put a 'label' on a child. And may keep wanting to 'wait and see' - but it is also true that the prognosis is better the sooner any therapies or interventions start - so what are they waiting for!!! Whilst others think it is absolutely necessary to get a diagnosis to get the supports the child needs. But the individual and the family has to live with that professionals personal preference, and quite frankly I don't think they should be allowed to do that. They should present the situation as it is.

 

This professional you are seeing is supposed to have experience of children with ASDs. So I would just try to be open with her and say that you have concerns about an ASD and that you have looked at the NAS website and that you do feel that this is a possibility and ask her what she will do to help her decide if he is on the spectrum and who else he will be referred to for assessments or observations. Say that you have been advised to keep a record of your concerns (put the onus on the NAS if it makes you feel better) regarding your son and then offer the information you have gathered.

 

Just go with your gut feeling, and say that you want answers because this is something long term (you've already kept notes for over a year and your first concerns were probably a while before that as well), so this isn't some 'phase' he is going through.

 

 

[bid]

And what can make it more confusing is that some professionals appear not to like to diagnose and put a 'label' on a child. And may keep wanting to 'wait and see' - but it is also true that the prognosis is better the sooner any therapies or interventions start - so what are they waiting for!!!

 

This is because there is a very broad 'normal' range of abilities/presentation amongst younger children especially.

 

It happened with my youngest son. We had concerns from when he was about 2/3 years old (lots of 'ticks' for ASD, plus severe bowel problems...I remember I even took photos of the long lines of lined-up cars to show them ).

 

Because of his elder brother my HV and GP were great and he went through the CDC assessment process, which took about a year plus in total, seeing all the different professionals.

 

By the time we reached the final clinic assessment, we could see how he had changed and progressed, and were completely comfortable with the decision that he wasn't on the autistic spectrum.

 

Bid

Edited April 16, 2009 by bid

[Sally44]

In my case my son's nursery teacher raised concerns when he was 3. I talked with the Health Visitor and my GP, both assured me that his lack of speech, spinning, sensory issues and repeating everything he heard back at you, or repeating TV dialogue was 'normal'. It isn't. He should have been referred for assessments immediately. Instead they said to wait, and if my son had problems in school that the school would raise them. My son was already having problems in nursery! Six months into reception year I was called into school because of his behaviour - hiding under the table, banging his head on the floor/wall, scratching his face, tantrums and crying, vomiting. He was unable to follow a simple instruction, he did not learn anything, he could not participate in the classroom, he could not play, share or take turns. These were all things I knew and which had been evidence since he was around 3 years old. I feel this was time lost and a missed opportunity. And it was very hard to have to take him kicking and screaming into school every day for the 18 months it took for them to diagnose him (with him receiving no extra support in school). And it took another 2 years on top of that to get a Statement.

I do understand that the whole process needs to take time to make sure they make the right decisions. But I feel my son was put through hell (and therefore the family as well), because the process was so slow and no supports were provided until after a diagnosis, and then what was available was so little (equivalent of one days input per year from the AAT), that it was laughable. If I hadn't managed to get a Statement and move schools we would be home schooling by now. And I know my story is not something extraordinary. Only now, that he is 8, do I feel that he is at the start of receiving the level of support, therapies and input he needs. Most professionals agree that therapies and supports have a better prognosis before the age of 6 which is when the brain is fully formed. There can be improvements and progress after the age of 6 obviously. But by the age of 6 the brain is fully wired and that wiring cannot be changed.

[Kathryn]

But by the age of 6 the brain is fully wired and that wiring cannot be changed.

 

Not so. There is evidence of some regrowth and reorganisation of the brain around adolescence. But I do agree with you that the earlier intervention starts, the better, for those children who need it.

 

K x

 

[Sally44]

Someone sent this to me, and it is right to the point. It's on the NAS website.

 

Watch Keith on BBC Breakfast talking about autism: http://news.bbc.co.uk/1/hi/programmes/breakfast/8002161.stm

 

My understanding of the brain (which doesn't amount to an awful lot), is that a toddlers brain actually has more connections than ours, and that only the connections that are used regularly are kept. The brain removes any connections that are not used frequently. This is my personal opinion, but I think it might be that due to difficulties associated with autism certain connections will not be used frequently enough (specifically associated with the triad of impairments) causing those connections not used to be 'pruned', which may be why some autistic behaviours appear at around 3+ years. But this pruning of the connections that are not regularly used is factual. And the impression I got from the reading I did (way back then), was that although there can be 'tweaking' and improvements, the overall connections are already in place by age 6.

There is also factual evidence that 'feral children' who have not acquired the use of language (because they have been bought up by animals), can not acquire language after the age of 4 years old. So a child with severe verbal difficulties, if not addressed at the age appropriate time, may not acquire language to a level they could have acquired it, or may not acquire language at all. There are definate windows of development which are all time bound, and if those windows of opportunity are not used they are lost. An example of this is that if a kitten, when born, has one eye covered with a patch, after a couple of weeks, when that patch is removed, that kitten will be blind in that eye and will never regain sight in that eye eventhough there is nothing physically wrong with that eye. It is a case of 'use it or lose it'. So the covered eye never developed the connections to the brain needed to retain sight. That, I believe, has alot of implications for the early intervention with children with ASDs.

Then on top of those difficulties, children with ASDs don't typically develop in the 'typical' sequential order, so they may acquire some basic skills in some areas, but not across the board. This leads to a 'spiky' profile, and again those areas of weakness need to be addressed and worked on otherwise the spiky profile will become more acute in certain areas as a lack of basic skills will have a domino effect on higher skills - and those difficulties will be much harder to address if we simply wait to see how the child develops.

 

I'm not sure what the brain development is around adolescence. I thought it was more to do with emotions and relationships and not actual brain growth - I'll have to go off on a websearch!

 

 

 

 

 

[bid]

I think what I was trying to highlight is the fact that sometimes the professionals do actually know what they are doing!

 

I would have put money on my youngest having an ASD (there are plenty of my threads from years ago when I was so worried about him)...this was in the light of his eldest brother having AS, ADHD and dyspraxia, both DH and myself working with children with complex needs including autism and also having AS myself.

 

But, the CDC team were quite right to observe and assess him over a period of about a year plus...and we could see how he had progressed and changed from 18 months or so when our concerns began to 4 years old when the assessments were concluded. And I think those here who know him will confirm that he is most definitely not on the spectrum!

 

Bid

Edited April 17, 2009 by bid

[Karen A]

Hi All.We had a different experience that I will attempt to summarise for those that are newer here.

CAMHS assessment and OT assessment at age 7 .Resulted in dyspraxia diagnosis.Due to my complex and extremely difficult history excellent professionals decided that Ben probably had some sort of attachment difficulties rather than AS.

Two years of weekly psychotherapy for myself,OH and Ben.

Ben improved significantly and we were extremely pleased.

Ben was keen to know whether he had AS and psychotherapists decided to request a further specialist assessment the 3di.Different excellent professionals within the team had different opinions.However the psychotherapists were very clear that Ben had made much too much progress to have AS.

Much to the surprise of the psychotherapists Ben did have AS after all.

The last two years have been extremely difficult at times as many of you know.However there is no doubt in mind that Ben has made significant progress.He had never had any intervention before the age of seven.

So I do believe that significant changes can be made even where there has been no early intervention.

For anyone wondering about the CAMHS psychotherapists we are still working with them and they are gradually coming to terms with the ASdx after a period in denial.

Incidently we have friends that include health professionals and parents of a child with ASD.Nobody expected that Ben would ever be diagnosed with ASD until a teacher who had a son with AS noticed that Ben was rather like her son.

The professionals who assessed Ben were amongst some of the most experienced in the country.Sometimes dx takes a long time because it can be compicated.

Even though the last three years have been desperately difficult at times I am glad that professionals did not rush to make judgements.

In most parts of the country Ben would never have been offered psychotherapy had he obtained a diagnosis of AS three years ago.Ben,OH and myself have benefited from some excellent support which we would not have recieved in most areas.

I believe that ultimately the most helpful diagnosis is the right one.Even though it has taken three years for Ben I would rather that than the situation where Ben was given an inapropriate diagnosis.

Since diagnosis it has been interesting to observe the change in expectations of Ben.Family,friends and school all now relate to him differently and have different expectations.Close friends have not known what to say.

I was a member of the Forum through most of our journey in the last three years.Ben has actually found obtaining an AS dx very helpful.In some ways I always felt I belonged on the Forum long before dx.

However what I guess I am attempting to say is obtaining an ASD dx is not all positive.I know it is the only way to access appropriate support and it is frustrating having to fight.

However I feel about the lable a bit like shaggy and scooby doo in the film.Anyone who does not know it will be lost.

Scooby doo announces boldly to everyone ''I am a racrifice'' [sacrifice] in celebratory fasion.Shaggy then explains to scooby.....''That is not a good thing....''

 

Before anyone jumps on me please understand that I am not saying that I feel ASD is a really negative thing either.However if an ASD dx becomes a lable that can be obtained without thorough assessment because it is almost seen as a great thing to have it is not appropriate for anyone...least of all those who most need it.Karen.

 

[Karen A]

Someone sent this to me, and it is right to the point. It's on the NAS website.

 

Watch Keith on BBC Breakfast talking about autism: http://news.bbc.co.uk/1/hi/programmes/breakfast/8002161.stm

 

My understanding of the brain (which doesn't amount to an awful lot), is that a toddlers brain actually has more connections than ours, and that only the connections that are used regularly are kept. The brain removes any connections that are not used frequently. This is my personal opinion, but I think it might be that due to difficulties associated with autism certain connections will not be used frequently enough (specifically associated with the triad of impairments) causing those connections not used to be 'pruned', which may be why some autistic behaviours appear at around 3+ years. But this pruning of the connections that are not regularly used is factual. And the impression I got from the reading I did (way back then), was that although there can be 'tweaking' and improvements, the overall connections are already in place by age 6.

There is also factual evidence that 'feral children' who have not acquired the use of language (because they have been bought up by animals), can not acquire language after the age of 4 years old. So a child with severe verbal difficulties, if not addressed at the age appropriate time, may not acquire language to a level they could have acquired it, or may not acquire language at all. There are definate windows of development which are all time bound, and if those windows of opportunity are not used they are lost. An example of this is that if a kitten, when born, has one eye covered with a patch, after a couple of weeks, when that patch is removed, that kitten will be blind in that eye and will never regain sight in that eye eventhough there is nothing physically wrong with that eye. It is a case of 'use it or lose it'. So the covered eye never developed the connections to the brain needed to retain sight. That, I believe, has alot of implications for the early intervention with children with ASDs.

Then on top of those difficulties, children with ASDs don't typically develop in the 'typical' sequential order, so they may acquire some basic skills in some areas, but not across the board. This leads to a 'spiky' profile, and again those areas of weakness need to be addressed and worked on otherwise the spiky profile will become more acute in certain areas as a lack of basic skills will have a domino effect on higher skills - and those difficulties will be much harder to address if we simply wait to see how the child develops.

 

I'm not sure what the brain development is around adolescence. I thought it was more to do with emotions and relationships and not actual brain growth - I'll have to go off on a websearch!

 

Hi.Research conducted on adults who have undergone long term psychotherapy following evidence of changes in the brain related to trauma has shown evidence that change can occurr and be demonstrated via scans even in adults.It is complicated and the psychotherapists would explain it better than me.However the evidence is that long term psychotherapy can be shown to effect the brain.Psychotherapy is all about emotions and relationships.

Emotions are controlled by areas within the brain.They cannot be seperated from brain development.

Also adolescence is one of the most significant times for the development of the brain.That is why teenagers are capable of much more complex thinking than primary school children.

 

I am an intersting example.You will need to accept my word for it as there is nobody who could assess me and nobody to provide evidence.

If I had been assessed 10 years ago I am convinced that I could have obtained an AS dx.I would have fulfilled all of the criteria.I have had 9 years of psychotherapy and now I would not fit the criteria.[Anyone with a different opinion need not respond at this point.]

I don't think you will find a great deal of evidence via a web search because most of the research is still being done.

I am not suggesting that psychotherapy is the answer either as my situation is complicated.

However if there is no scope for further significant change once children reach age 6 then that is a clear argument for not providing intervention for older children.

It is exactly the reasoning that professionals use when they don't offer any support on the basis that ASD is a lifelong condition that cannot be changed.Karen.

Edited April 17, 2009 by Karen A

[Karen A]

Someone sent this to me, and it is right to the point. It's on the NAS website.

 

Watch Keith on BBC Breakfast talking about autism: http://news.bbc.co.uk/1/hi/programmes/breakfast/8002161.stm

 

My understanding of the brain (which doesn't amount to an awful lot), is that a toddlers brain actually has more connections than ours, and that only the connections that are used regularly are kept. The brain removes any connections that are not used frequently. This is my personal opinion, but I think it might be that due to difficulties associated with autism certain connections will not be used frequently enough (specifically associated with the triad of impairments) causing those connections not used to be 'pruned', which may be why some autistic behaviours appear at around 3+ years. But this pruning of the connections that are not regularly used is factual. And the impression I got from the reading I did (way back then), was that although there can be 'tweaking' and improvements, the overall connections are already in place by age 6.

There is also factual evidence that 'feral children' who have not acquired the use of language (because they have been bought up by animals), can not acquire language after the age of 4 years old. So a child with severe verbal difficulties, if not addressed at the age appropriate time, may not acquire language to a level they could have acquired it, or may not acquire language at all. There are definate windows of development which are all time bound, and if those windows of opportunity are not used they are lost. An example of this is that if a kitten, when born, has one eye covered with a patch, after a couple of weeks, when that patch is removed, that kitten will be blind in that eye and will never regain sight in that eye eventhough there is nothing physically wrong with that eye. It is a case of 'use it or lose it'. So the covered eye never developed the connections to the brain needed to retain sight. That, I believe, has alot of implications for the early intervention with children with ASDs.

Then on top of those difficulties, children with ASDs don't typically develop in the 'typical' sequential order, so they may acquire some basic skills in some areas, but not across the board. This leads to a 'spiky' profile, and again those areas of weakness need to be addressed and worked on otherwise the spiky profile will become more acute in certain areas as a lack of basic skills will have a domino effect on higher skills - and those difficulties will be much harder to address if we simply wait to see how the child develops.

 

I'm not sure what the brain development is around adolescence. I thought it was more to do with emotions and relationships and not actual brain growth - I'll have to go off on a websearch!

 

Hi.I should say if I sound flippant.Some of the people who support our family are involved in ongoing research.So if your reading was way back then that might explain the differences of opinion.Research into brain development and the ability to monitor it is moving at a pace. Karen.

 

[Karen A]

Not so. There is evidence of some regrowth and reorganisation of the brain around adolescence. But I do agree with you that the earlier intervention starts, the better, for those children who need it.

 

K x

 

Hi.I thought I would say just to be very clear.I completely agree that early intervention is really important.

I just want to be clear that I don't believe that all is lost for those children who don't get any intervention early on. Karen.

 

[Kazzen161]

It is possible for the brain to make new connections/reorganise eg: stroke patients learn to walk and talk again

 

I would guess that the way Aspies process non-verbal information in the brain (once they have been taught to do so) may not be the same way that NTs do, even though to the casual observer they can tell no difference.

 

I read about teen's brain connections having a major reorganisation and pruning a while ago - my NT teen lost a lot of his social skills for a time.

 

With any research it is good to note when it was done. I did a psychology degree 20+ years ago, and a lot of the stuff we were taught then is no longer valid.

 

 

[Karen A]

It is possible for the brain to make new connections/reorganise eg: stroke patients learn to walk and talk again

 

I would guess that the way Aspies process non-verbal information in the brain (once they have been taught to do so) may not be the same way that NTs do, even though to the casual observer they can tell no difference.

 

Kazzen you may well be right about Aspies way of processing information once they have been taught to do so not being the same as NTs.

I guess I was attempting to say that there is the potential whether NT or ASD to learn to do things throughout life.

I am aware that some professionals view ASD as a lifelong condition and so argue that offering active intervention is not cost effective because there is not the potential to change the wiring of the brain.They would certainly not believe it was worth investing in significant support for older teenagers or adults. Karen.

 

[Kazzen161]

I guess I was attempting to say that there is the potential whether NT or ASD to learn to do things throughout life.

I am aware that some professionals view ASD as a lifelong condition and so argue that offering active intervention is not cost effective because there is not the potential to change the wiring of the brain.They would certainly not believe it was worth investing in significant support for older teenagers or adults. Karen.

 

I agree. We are all on "a learning journey", as the Government likes to say - we never stop learning, whether that be how to program a DVD player, to learn to drive, to learn a foreign language.

 

I have seen so many young people with asd who continue to make amazing progress in academic, life and social skills throughout their twenties. I think it just takes them a bit longer to get there and a bit of specialist teaching. Getting that help after the age of 19 is not easy, but it is well worth it.

 

The brain is an amazing thing, and we cannot even begin to understand how it works. There may be times in our life when it is easier to learn certain things, but it does not mean we cannnot do so at other times. Even if we cannot grow more brain cells when older, it seems we only use a small proportion of those we do have, so there is always the chance for different parts of the brain to take over the functions of parts that are damaged/not working properly.

[Karen A]

I agree. We are all on "a learning journey", as the Government likes to say - we never stop learning, whether that be how to program a DVD player, to learn to drive, to learn a foreign language.

 

I have seen so many young people with asd who continue to make amazing progress in academic, life and social skills throughout their twenties. I think it just takes them a bit longer to get there and a bit of specialist teaching. Getting that help after the age of 19 is not easy, but it is well worth it.

 

The brain is an amazing thing, and we cannot even begin to understand how it works. There may be times in our life when it is easier to learn certain things, but it does not mean we cannnot do so at other times. Even if we cannot grow more brain cells when older, it seems we only use a small proportion of those we do have, so there is always the chance for different parts of the brain to take over the functions of parts that are damaged/not working properly.

 

....So I may yet learn how to programme the DVD player even at my age....my lads will be pleased.

 

[bid]

I would guess that the way Aspies process non-verbal information in the brain (once they have been taught to do so) may not be the same way that NTs do, even though to the casual observer they can tell no difference.

 

Sorry to digress from the point of the thread, but I think you are probably on to something here, Kazen.

 

Obviously as someone with AS I can't know how the rest of you guys process things, but I do think that even when I 'get' something, I very often don't understand, or not in the same way as my NT companions.

 

Interesting stuff...

 

Bid

 

[Kathryn]

It is possible for the brain to make new connections/reorganise eg: stroke patients learn to walk and talk again

Absolutely. People can acquire language as well after the crucial early years although the pattern of acquisition may be different.

 

I read about teen's brain connections having a major reorganisation and pruning a while ago - my NT teen lost a lot of his social skills for a time.

 

With any research it is good to note when it was done. I did a psychology degree 20+ years ago, and a lot of the stuff we were taught then is no longer valid.

 

Yes definitely. The research into the reorganisation in teen brains is fairly new and the idea that everything is fixed by the age of 4 or 5 or 6 is now questioned, (according to my tame psychologist who I discussed this very interesting subject with. )

 

The potential to learn new patterns of behaviour is always there for children with ASD although the basic wiring cannot be changed. I would hate any parent reading this thread to believe that if their child has not had x amount of professional input by a certain age that their prognosis is poor and their future is bleak. It's simply not the case.

 

My 20 year old dx AS received no intervention at all before the age of 15, and very little that was of any use after that. School was traumatic most of the time and she had no SEN input whatsoever. She is 20 now, and at the moment is on a train somewhere between Manchester and Euston, having taken herself off on holiday and coped, successfully and mostly alone, for 2 weeks. Next week she'll return to her mainstream college course. She's still autistic.

 

The point I'm trying to make here - (apart from slipping in a gratuitous proud parent boast ) is that sometimes, despite all the odds, things work out.

 

K x

Edited April 17, 2009 by Kathryn

[bid]

The potential to learn new patterns of behaviour is always there for children with ASD although the basic wiring cannot be changed. I would hate any parent reading this thread to believe that if their child has not had x amount of professional input by a certain age that their prognosis is poor and their future is bleak. It's simply not the case.

 

My 20 year old dx AS received no intervention at all before the age of 15, and very little that was of any use after that. School was traumatic most of the time and she had no SEN input whatsoever. She is 20 now, and at the moment is on a train somewhere between Manchester and Euston, having taken herself off on holiday and coped, successfully and mostly alone, for 2 weeks. Next week she'll return to her mainstream college course. She's still autistic.

 

The point I'm trying to make here - (apart from slipping in a gratuitous proud parent boast ) is that sometimes, despite all the odds, things work out.

 

K x

 

Bravo, L!!

 

And mum <'>

 

Bid

 

Big A has done things I never thought he would, and again apart from sporadic OT and physio courses from the age of 6 he had no specialist input until he was 15. I wish I had known anyone with a young adult with AS when he was little, because the stereotypes at the time were overwhelmingly negative.

Edited April 17, 2009 by bid

[Lisa40]

Absolutely. People can acquire language as well after the crucial early years although the pattern of acquisition may be different.

 

 

 

Yes definitely. The research into the reorganisation in teen brains is fairly new and the idea that everything is fixed by the age of 4 or 5 or 6 is now questioned, (according to my tame psychologist who I discussed this very interesting subject with. )

 

The potential to learn new patterns of behaviour is always there for children with ASD although the basic wiring cannot be changed. I would hate any parent reading this thread to believe that if their child has not had x amount of professional input by a certain age that their prognosis is poor and their future is bleak. It's simply not the case.

 

My 20 year old dx AS received no intervention at all before the age of 15, and very little that was of any use after that. School was traumatic most of the time and she had no SEN input whatsoever. She is 20 now, and at the moment is on a train somewhere between Manchester and Euston, having taken herself off on holiday and coped, successfully and mostly alone, for 2 weeks. Next week she'll return to her mainstream college course. She's still autistic.

 

The point I'm trying to make here - (apart from slipping in a gratuitous proud parent boast ) is that sometimes, despite all the odds, things work out.

 

K x

Kathryn

 

Your replies always give me hope, because at the moment I am at my wits end, as you know, with my 16 year old daughter who is in denial of having AS, with a late dx last September, hasn't been in school for all of Year 11, is reclusive at home and I am worried sick about what I can do to help her.

[Mum of 3]

Erm...

 

Well, that certainly created a bit of a kerfuffle, didn't it?...

 

I'm almost scared to say anything now!!!

 

Anyway, I went to the appt....

 

Mum went with me, so she was able to play with G whilst i talked to Paed. He went through some of the stuff the last Paed had written, which I hadn't seen a copy of (shouldn't I have copies of reports sent to me? Can I request this?).

 

He also went through a checklist of sympoms/traits, and asked for examples of where G fits with these.

 

He said he wants to do a blood test for fragile x syndrome. I need to know more about this.

 

Didn't bring out my diary in the end, as the conversation seemed to flow quite well, and the Paed was keen to understand everything I said fully, and asked lots of searching questions.

 

He said this appt will form his part of the multi-disciplinary assessment, so we won't be seeing him again now.

 

The date for the MDA meeting is in August, so we should be getting lots more appts soon.

 

Thanks all for your replies. This is such an emotive issue and such a difficult time. We all just want to do the right thing for our children, and that's hard when you're in such unfamiliar territory.

 

<'> <'> <'> to you all.

[frogslegs]

It is a difficult time. I felt very emotional before Easter as last appointment for diagnosis and it took me a couple of weeks to relax and take things on board. I must say I was copied on everything so I think you should ask for missing reports (all these things are supposed to be open now).

Good luck <'>

[Karen A]

Erm...

 

Well, that certainly created a bit of a kerfuffle, didn't it?...

 

I'm almost scared to say anything now!!!

 

Anyway, I went to the appt....

 

Mum went with me, so she was able to play with G whilst i talked to Paed. He went through some of the stuff the last Paed had written, which I hadn't seen a copy of (shouldn't I have copies of reports sent to me? Can I request this?).

 

He also went through a checklist of sympoms/traits, and asked for examples of where G fits with these.

 

He said he wants to do a blood test for fragile x syndrome. I need to know more about this.

 

Didn't bring out my diary in the end, as the conversation seemed to flow quite well, and the Paed was keen to understand everything I said fully, and asked lots of searching questions.

 

He said this appt will form his part of the multi-disciplinary assessment, so we won't be seeing him again now.

 

The date for the MDA meeting is in August, so we should be getting lots more appts soon.

 

Thanks all for your replies. This is such an emotive issue and such a difficult time. We all just want to do the right thing for our children, and that's hard when you're in such unfamiliar territory.

 

<'> <'> <'> to you all.

 

Hi.I hope things go ahead smoothly.I remember the waiting for appointments well.Last summer felt like a long time as our appointment was in October.

Fragile x is an inherited condition.It has some similar features to ASD.I think assessment often includes a blood test to rule it out.

This site provides more information.

http://fragilex.org.uk.dnnmax.com/Home/tabid/36/Default.aspx

Karen.

Edited April 20, 2009 by Karen A