Have we missed out by not seeking a diagnosis??

[SueB]

Hi

 

I'm curious really to know if we have missed out on anything by Tom not having a diagnosis.

 

Tom was born with the umbilical cord around his neck and starved of oxygen for a while and it was thought later that he had cerebal palsy. Anyway he didn't...he was just very late in crawling and then walking and talking. Once he got going though he was like a steam train. He caught up to his peers academically and then left them all standing.

 

Throughout all of this, I knew something was wrong but never felt I had anything concrete to take to the doctors.

 

He became very rigid in his routine, developed a stammer (resulted in unsuccessful speach therapy), became obsessionally fixated on sciencey stuff, became disruptive in class - he was bored. His brilliant school allowed him to join other classes above him to keep him focussed on his education.

 

There are many, many other traits I go on about - but you get the picture.

 

Anyway, forward on to Tom who is now 17 and has given us all grey hairs and ulcers lol. We now have him catching the bus on his own to college and he has a part time job.

 

Would a diagnosis have made a difference for him and for us? Would his life be easier do you think? Has he missed out on any chances that I wasn't aware of?

 

Sue

xx

[Tally]

Hi Sue,

 

I am an adult diagnosed with AS at the age of 25. The possibility that I was autistic was raised at several points throughout my schooling, but my parents decided not to pursue the possibility. By secondary school I was just regarded as shy, lazy and non-co-operative. I do wish I had been given some support with social skills, but in some ways, the lack of support has left me more self-reliant than I might otherwise have become.

 

I didn't get any extra support, but a diagnosis does not automatically guarantee support anyway. Even where support is guaranteed by a statement, it very much depends on the attitude of the school whether they will enter into the spirit of it. It sounds like his school catered well for your son and saw through his disruptive behaviour.

 

A diagnosis might be helpful in the future once he starts looking for full time work. Without the right support, he may well not be able to fulfil his potential, or even cope with full time work at all. A diagnosis could help him to access support, adjustments or benefits. Even if he does not need those things, a diagnosis could help him to feel more comfortable with the way he is and the difficulties he faces. If he is willing, I would recommend you seek diagnosis as soon as possible. It will only get harder, the older he gets.

[Flora]

Sue

 

Bringing up any child, NT or otherwise, gives all parents a few grew hairs! It sounds to me that your lad has done extremely well regardless of any sleepless nights you've had about him.

 

Tbh it's impossible to tell in retrospect if a dx would have made a difference even if he wasn't doing so well now. As Tally says, a diagnosis is not an automatic key to support and services.

 

Well done to you and your son, he sounds like, at least for now, that he's on the right track with college, public transport and work

 

See how he gets on. You don't mention how he is socially,does he friends etc?

 

Flora

[SueB]

Hi Tally

 

I have spoken to Tom regarding differences between him and his peers, however, he won't have none of it and calls everyone who is not like him a 'Chav!'...he has a lovely way with words. I have mentioned Aspergers to him in a round a bout way, but Tom will not acknowledge any of it.

 

As Tom has got older, I think I now view a possible diagnosis of Aspergers as a 'poisoned chalice'. I know legally he is not allowed to be discriminated with a disability, but I also know that realistically he will be. I think I have thought that if I can keep a label away from Tom then he has a better chance of succeeding in life, I think I have an unrealistic phobia of labels.

 

I'm not sure if I am doing the right thing or wrong thing...I only know that at some point in his future he has to fit in somewhere.

 

Sue

xx

[SueB]

See how he gets on. You don't mention how he is socially,does he friends etc?

 

Flora

 

Hi Flora

 

Tom is a loner , though he isn't bothered by it...I think I get more bothered than him.

 

He has never had friends really, he has always been a bit odd to keep them. His favourite pastime would be listing how many objects would burst a ball...or other obsecure topics of conversation?? Friends have always seemed to drift into his life and then back out again once they realise Tom will only speak about certain subjects.

 

He doesn't do small talk...he thinks it is irrelevant. He doesn't see the connection that having good interpersonal skills equals making and keeping friends.

 

However, it is not all doom and gloom for him as he is working part time and coping with life in general. He is a happy lad who doesn't want much out of life, he is a fab lad who happy with his lot really.

 

We are teaching him about how to respond to different situations and I can see an improvement in him, for example, when he found out someone had lied to him he was very puzzled by it and didn't know how best to respond.

 

He really is a joy to have.

 

Sue

xx

[cmuir]

Hi

 

Certainly academically you've stated that your son has excelled - how has he faired in other areas eg socially, etc?

 

For whatever reason you've chosen not to seek a diagnosis earlier. Fact is there's no real way of knowing if a diagnosis would have helped or not. My son wasn't diagnosed until he was 4.5 - it took me 3.5 years to get anywhere/diagnosis. The main reason I sought a diagnosis was because I wanted to know for sure why my son behaved the way he did, but more importantly I believed it would ensure he'd get a high level of support in school. Whilst a diagnosis helped us in some areas, it neither helped nor hindered us in others. My son is now 6.5 and over the years we've been passed from pillar to post in terms of seeing specialists and I have to say that only one has really helped us. CAMHS have been a very difficult group of individuals to work with - I've found them to be downright judgemental and are generally full of a lot of theory, but completely lack any practical whatsoever (they have a 'one size fits all' approach which is useless when dealing with someone who has a neurological disorder than can be very unpredictable (I've long since stopped tried to analyse my son's behaviour because you cannot always apply logic for the aforementioned reasons). I think it's a fair comment to say that whilst a diagnosis can open some doors, there are lots of other battles to fight whereby a diagnosis seemingly doesn't come into it. I would try not to agonise over whether things could have been different with a diagnosis.

 

There are adults who are undiagnosed and have done very well for themselves. Those that do have diagnoses that are in eg employment do not have to disclose to anyone including an employer that they have an ASD. Some do choose to disclose that they do to their employers and whilst some may feel they've been discriminated against because perhaps they've lost out on promotions that require good communication, undoubtedly there will be others that simply wouldn't want that kind of responsibility.

 

Best wishes

 

Caroline

Edited July 22, 2008 by cmuir

[darky]

Hi Sue I think only time will tell on this one. These days there is more recognition, and I know support in a lot of cases is not ideal, but in comparison to the support and recognition that was around when say I was at school, most diagnosed children get a lot more support than our generation did, or the generation before.

 

These days there seems to be a slightly worrying perception of independance and concerns for the future. My dad is a prime example of a person with Asperger's who had a very difficult upbringing, poor schooling, but managed well enough without being able to read or write properly to bring 3 children up and has always had a job and worked hard. When I was 5 I was recognised as having a problem, at first they thought temporal lobe epilepsy because of an abnormal brain scan and "uncontrolable outbursts" due to loud noises, in addition my rather self absorbed demanding personality. I was never diagnosed, and the diagnosis back then was demanding child who reacted badly to having younger syblings and a mother who couldn't cope. I was sent to a special playgroup but by the time I started school that was it, nothing and no help, and school reports were full of comments that blamed my personality for lack of achievments. I grew up confused, but navigating myself through life, learning from others and trying to make sense of the world. I believe it was all that, that is responsable for me being able to bring up 3 children on the spectrum, I have held down jobs, and I am happily married.

 

So I don't actually know whether an earlier diagnosis would make a big difference. Like I said, I think time will tell whether early diagnosis and support has actually helped this generation, or whether it has actually caused more problems.

 

I am not saying diagnosis and support is wrong by any stretch of imagination, it's just trying to look at things from both sides. Generations of un-dx and un-supported people vs this generation of early diagnosed and supported children. Who knows what is going to happen. I would love to think that with additional support and recognition the majority of children will succeed. But point is, will they succeed more than people of my generation or before that had these issues with no support?? Just food for thought.

[pearl]

Hi Sue

You sound like a brilliant supportive mum & your lad sounds lovely

 

Sounds like he's doing pretty well without a dx. And at 17 he will soon be legally adult & the decision will be his. How does he feel about it? Does he want to pursue a dx or is he happy as he is?

 

My lad is nearly 19 & sounds quite similar to yours, but he was dx'd at 5 so we have no way of knowing how he would have coped without extra help.

 

I'd say, given that he's nearly adult & is doing ok, an open mind is the best approach - see how he feels & take it from there.

 

There are many threads on here about the pros/cons of a formal dx in the workplace.

[SueB]

Hi all and thank you for your fab replies.

 

What origionally put me off seeking a diagnosis for Tom was professionals constantly changing what they thought about him??

 

First he had Cerebal Palsy, then he didn't.

 

I then remember the health visitor labelling Tom Hyperactive and encouraging me to see a GP, which I did. The GP then tried labelling me a bit of an attention seeker lol!!!

 

His nursery then said they thought he had epilepsy as he had blank moments?? I had never noticed that at home!!!...however he did used to switch off from you if he didnt want to join in?? EEG tests showed he doesn't have epilepsy.

 

And so on and so ###### forth....!!!

 

In he end (and to take some stress off me) OH and i decided to just carry one as we always had and every time anyone mentioned the possibility of something being wrong with Tom...we told them to %*&%^* off!!!

 

This was when Tom was about 8 and from then on our lives improved 1000%

 

Now on to Aspergers...one day at work a colleague and I were discussing a little boy who had been diagnosed with Aspergers. We got loads of info on Aspergers and while reading it, the information was describing my Tom...every quirk, every nuance, it was DEFINITELY our Tom. I know in my heart Tom has Aspergers.

 

I think Darky is right...only time will tell. I would hate to think I had made Tom lose out on anything. On the other hand, I think by not seeking a diagnosis I have saved myself a boat load of stress. When I read some of the posts I don't know how some mothers (and other family members) have survived the fight and lived to tell the tale.

 

Sue

xx

Edited July 23, 2008 by SueB

[darky]

On the other hand, I think by not seeking a diagnosis I have saved myself a boat load of stress. When I read some of the posts I don't know how some mothers (and other family members) have survived the fight and lived to tell the tale.

 

You make a good point Sue. For me this is how it goes. We get seen by SALT, OT, Physio, consultant or any professional. We are told the child has this problem and are given recomendations, we then spend our time fighting to ensure they get every scrap of help and support that has been recomended. I don't know if the recomendations actually do help as much as I hope they would or would they improve as much without it all? I know of all the professionals I have seen with my child, and all the recomendations we have been given, in particular, my daughter still has the problems, all it does for us is give us some answers, it does not take the problems away. With exeption to the OT advice, or equipment that might actually make life a little easier. I know it sounds very silly, but this does apply to me, and I am not in any way saying that it applies to anyone else but I know I have got SOOO caught up in the injustace of my children NOT getting the help recommended, that I don't stop to think whether or not it would actually benefit them! I hope that makes sense? <'>

[alanm]

I am an adult diagnosed with AS at the age of 25. The possibility that I was autistic was raised at several points throughout my schooling, but my parents decided not to pursue the possibility. By secondary school I was just regarded as shy, lazy and non-co-operative.

Hi Tally

I was diagnosed at 4 as "autistic" (before "Asperger", now the more apt dx for me, was recognised), however my parents chose not to tell my schools for fear of prejudice, so apart from my early dx my situation was similar to yours in terms of not getting any extra support.

 

 

Tom is a loner, though I think I get more bothered than him. He doesn't do small talk...he thinks it is irrelevant. However, it is not all doom and gloom for him as he is working part time and coping with life in general. He is a happy lad who doesn't want much out of life, he is a fab lad who happy with his lot really.

Hi Sue,

As a shy AS teenager I'd been there myself and thought I'd put a link up to this post I'd put on another thread where a couple of other mums were talking about their teenagers. I now have an enjoyable social life in my 30s, so don't give up hope that he too may have in his adulthood, probably more likely via a niche interest social club rather than mainstream pubbing and clubbing though, as has been the case for me. Teenage life is exceptionally difficult with AS, when most teenagers are doing the "rebel" thing.

 

You have your reservations over having a dx with the "labelling" aspect, which ties in with my parents' thoughts when I was younger, but the work aspect is my main reason to be in favour, especially referring back to the later part of Tally's earlier post:

A diagnosis might be helpful in the future once he starts looking for full time work. Without the right support, he may well not be able to fulfil his potential, or even cope with full time work at all. A diagnosis could help him to access support, adjustments or benefits.

Admittedly discrimination is an issue, but these factors are why I'm in favour:

- having had appraisals where I hadn't been disclosing my AS in the past and was told to "improve" at communication skills

- disclosing would therefore be favourable if I had issues in future positions

- while looking for work on Jobseekers allowance, there is the opportunity to consult with a Disability Adviser and the disability would be noted on the agreement, so staff would be aware of unsuitability for certain types of job.

 

Best of luck

 

Alan

[SueB]

but I know I have got SOOO caught up in the injustace of my children NOT getting the help recommended, that I don't stop to think whether or not it would actually benefit them! I hope that makes sense? <'>

 

You've hit the nail on the head....for me.

 

You see Tom was mainy healthy, had a good pair of lungs on him and once he started to catch up to his peers, my worries lessoned. We've accepted his quirks and have managed to work with them. BUT when health professionals (and I must add they were working in Tom's best interest) were making different suggestions, it made me really anxious to want answers....and then I could feel myself getting caught up in it all.

 

My one big lifeline was Tom's school...they sort of stopped the merry go round and let me get off. They helped me put things into prospective, focus more on the positives and less on the negatives and between us we worked out a plan of action and stuck to it.

 

And the rest is history.

 

Alan has made a good point for me to consider though.

 

Admittedly discrimination is an issue, but these factors are why I'm in favour:

- having had appraisals where I hadn't been disclosing my AS in the past and was told to "improve" at communication skills ( I don't know how to quote more than once lol)

 

Tom wants to complete his Engineering degree and then go into the RAF. He is looking at Sponsorships already. However, as this job involves a massive amount of communication and has big implications should he be in active service, would he be able to do this???

 

Sue

xx

[darky]

Sue you sound like a fab mum Alan definately makes a very good point. I know with my eldest son, we sought out a diagnosis, not for his acedemic ability, but because of the comments on his reports. I did feel that we didn't need to push for support as such, but more awareness of any problems that he had. Having thought about it some more, with my younger children, the additional support they have had in school has definately helped them to progress in an acedemic way. It has brought on their confidence more than anything. As for when they go for jobs and things, like Alan said, it can be useful to be able to get that support to get a job and be supported in it, and so that employers understand what is going on. It's a fine line though isn't it?

[SueB]

It's a fine line though isn't it?

 

It's a bl**dy nightmare

 

When Tom was little (he's 17 now), I don't think very many had heard of Aspergers so he certainly couldn't have been diagnosed with that. I shudder to think what he would have been diagnosed with...it would definitely have been a horrible behavioural label of some sort. How bad would that have been! This has always been at the back of my mind.

 

Tom's school was very laid back and even though they had no awareness of Aspergers (this is in the mid 90s) they were fab at coming up with plans. I didn't always agree with them for example when they use to keep Tom in at playtime for not finishing his work. He used to sit and stare out of the window and twiddle his hair - they insisted Tom pay full attention. I once asked them why they thought it soooo important if the proof was there that Tom was still learning and getting good grades? They stressed that Tom had to develop his attention span....and to be honest they were right.

 

I think I would have cracked a long time ago if it had not been for his head teacher and the rest of the staff. I remember Tom leaving Junior school and I was devastated!! The head reassured me that he had passed everything on to his new high school...and he did!!

 

Darky - I don't know what I'm trying to say to be honest...I've always had a lot of 'what if's' since I had the light bulb moment when a colleague and I were discussing the little boy with Aspergers. I think I'm trying to get rid of some of the guilt that is lurking in the back of my mind....and trying to convince myself that when I made the decision not to see any more proffessionals about Tom, that I made the right decision.

 

Sue

xx

[bid]

Hi again Sue

 

If it makes you feel any better, we did everything 'right'...dx of dyspraxia at 6, full dx of AS and ADHD too at 7.

 

Coped 'OK' at primary and yrs 7 and 8 at secondary. Massive breakdown at 14. Fought for and got a Statement plus place at residential special school for AS...

 

And now at 19 he is at crisis point, so sometimes I wonder what was the point of all that struggle and anxiety as we have ended up exactly where we were warned he would be if he didn't go to residesi

 

Bid

Edited July 23, 2008 by bid

[darky]

Sue, I think that if Tom is doing well, and if he feels that the label isn't what he wants, then I think you can say you done the right thing. As long as Tom knows you support him in what ever he does, or wants to do, I think that is all a parent can ever do. <'>

 

Regarding what you said about school and things, I am learning so much even now about my own children. They do need to be pushed, they need to develop their own skills and strategies. I do think that is vitaly important for their confidence. Life is all about taking responsability, making choices, and accepting consequences whether you are labled or not. I know I have been guilty of getting over involved and jumping to their defence in the name of a lable. It's bitten me on the backside. My daughter snapped her 2nd DS and said "I can't help it" She tears up her room and destroys her belongings and says "I can't help it" She has to learn that it is NOT ok to do those things and there are other ways of managing her impulses or sensory needs whatever the case may be. Disrupting a class is not acceptable, and whilst they may have a good reason for doing it, they still have to learn other ways of expressing themselves. I am learning to take a step back and trust that professionals are doing what they can, in the majority of cases, to help my children. My children all need to learn to take responsability for their actions. Ok, it's a harsh lesson, but that's life I think! My guilt now is the opposite of yours, it is because I have pushed hard to get the support and recognition, but for a long time I saw it as an excuse and demanded people listened and done things my way for fear of them missing out. <'> <'> <'>

[SueB]

Hi again Sue

 

If it makes you feel any better, we did everything 'right'...dx of dyspraxia at 6, full dx of AS and ADHD too at 7.

 

Bid

 

Hi Bid

Please don't take this the wrong way, but to be honest...this does make me feel better - although I am deeply saddened for you. Your experience alone makes me realise that I may have spent yonks chasing an 'answer' to why Tom is like he is, but then what??

 

It's a bit like the Matrix film philosophy - do you take the red pill or the blue pill? I took the blue pill and stayed ignorant. You and Darky took the red pill for 'enlightenment and the truth'.

 

Darky

 

My guilt now is the opposite of yours, it is because I have pushed hard to get the support and recognition, but for a long time I saw it as an excuse and demanded people listened and done things my way for fear of them missing out.

 

I think sometimes it's a case of damned if you do and damned if you don't...you did...I didn't...and we still feel bl**dy guilty.

 

Thank you all so much for chatting with me...you have done me more good, than all the professionals could ever do to get my head sorted.

 

Sue

xx

[TheNeil]

I was dx'd at the grand old age of 31 and as to whether it would have made a difference if I'd known earlier...well it depends on how you look at it.

 

On the one hand knowing might have made things 'easier' as people would have been aware and (possibly) made adjustments. On the other hand by not knowing I was forced to learn how to cope and survive in the world. Which is the better option depends on your personal judgement but, for me, being able to make my own way in the world is more important. Yes it might have been hard and yes there might have been some very low points but I know that I'm able to do things and not have to rely on others (as much).

 

I was asked a very similar question at a lecture I gave and my response was to not wrap kids in cotton-wool and do everything for them or hide them away from the world - it's here that they have to live (regardless of any diagnosis or 'label') so getting them as prepared as possible can only be a good thing. In many ways, not knowing means that ASD kids don't get treated as being 'different' (well not as 'different'. I know that I always felt 'different' but the dx simply explained why and made me feel a lot more comfortable being 'me').

 

No idea if any of that helps or even makes sense.

[darky]

Big hug to you Sue <'> When it comes to parenting there is no right or wrong, the rule is to do the best you can. We all may have done things differently but there is a huge point, we love our children as much and no matter what decisions we make, we made them and our children will know we did what we did because we love them. Parenting does not come with a manual, I wish it did!! We are all learning along the way! What a job eh?? <'>

[LicklePaulie]

Sorry to join the chorus of "Don't knows" but that is the nature of this question. bid describes one side of the debate whilst many of us can attest to growing up in a world that did not know of AS (I was frequently asked by Ed Psych why I was so disruptive in school which I happily told him was his job to work out) who have grown up with it and managed somehow to make our way "successfully" (well, successfully enough not to qualify for any support) into adult life. On the other hand, one would hope (though the evidence suggests otherwise) that increased awareness of the issues would bring about increased sophistication in the strategies for dealing with them and improving the subjects' life chances...

 

As for whether to push for a diagnosis now, it would appear that Tom would not be keen to accept it or its consequences so, personally, I would keep it on the back-burner.

 

Have you lost out by not seeking a diagnosis? Sorry, Don't know.

[SueB]

As for whether to push for a diagnosis now, it would appear that Tom would not be keen to accept it or its consequences so, personally, I would keep it on the back-burner.

 

Have you lost out by not seeking a diagnosis? Sorry, Don't know.

 

Hi LicklePaulie

 

I have already made my mind up and will not be seeking a diagnosis, however, to be honest, I made that decision years ago when Tom was a lot younger.I think I have been looking for proof that I have made the right decision but looking at Tom now, I know I have. We have worked hard with his social skills and have got him to a level where he can work part time, catch a bus and do well in college....and hopefully their will be much more to come for our Tom.

 

I work with families whose children don't have Aspergers/Autism, and I see their children struggle to achieve what Tom has, for a variety of reasons. I also see the school do their utmost best and still have an uphill struggle to keep them engaged. Maybe it is because of this that sometimes I am a bit tougher with Tom and on occasions I have a '...just get on with it and consider yourself lucky' attitude with him.

 

It's really good to hear how people who grew up in the days of pre-Aspergers and who have predominantly managed to achieve.

 

Neil your post made perfect sense to me and brought me a lot of reassurance. I think Tom will be like you a be a coper (or at least I hope he will be)

 

Sue

xx

[Karen A]

You've hit the nail on the head....for me.

 

You see Tom was mainy healthy, had a good pair of lungs on him and once he started to catch up to his peers, my worries lessoned. We've accepted his quirks and have managed to work with them. BUT when health professionals (and I must add they were working in Tom's best interest) were making different suggestions, it made me really anxious to want answers....and then I could feel myself getting caught up in it all.

 

My one big lifeline was Tom's school...they sort of stopped the merry go round and let me get off. They helped me put things into prospective, focus more on the positives and less on the negatives and between us we worked out a plan of action and stuck to it.

 

And the rest is history.

 

Alan has made a good point for me to consider though.

 

Admittedly discrimination is an issue, but these factors are why I'm in favour:

- having had appraisals where I hadn't been disclosing my AS in the past and was told to "improve" at communication skills ( I don't know how to quote more than once lol)

 

Tom wants to complete his Engineering degree and then go into the RAF. He is looking at Sponsorships already. However, as this job involves a massive amount of communication and has big implications should he be in active service, would he be able to do this???

 

Sue

xx

 

Hi Sue.

I have not thread through all of the rest of the thread so don't know if anyone else has mentioned this.

The armed forces is it appears the exception to disabiltity discrimination legislation.An individual must disclose if they have a disability or medical condition on application.Another Forum member posted a while ago that they had automaticaly been turned down because of an AS Dx.

So if your DS is keen on joining the RAF it may be worth bearing in mind.

Karen.

[bid]

Also, Sue, I do wonder whether your son would have actually got a dx as certainly with my son it was blindingly obvious to everyone involved (school, medical, SS) that he had some kind of 'special needs', although granted 13 years ago it took them a while to establish his full dx because AS was not so well recognised? There was no question of whether he had special needs, just which was the right dx.

 

I guess I mean that if your son had presented with very marked difficulties, like my son, you would have had to fight against getting a dx, if that makes any sense?? My son was referred initially through his primary school because of their concerns, he had regular physio and OT until he was 11, etc. You couldn't really miss that he had very marked difficulties.

 

It may be that your son is on that line between AS and NT, but not into the spectrum sufficiently to get a formal dx. There are a number of adults here who I think would describe themselves in this way. As someone who has a dx, one of the diagnostic criteria for adults is that the difficulties faced due to the Triad of Impairment must impact negatively on your life, rather than being 'quirks' or lesser difficulties.

 

HTH

 

Bid

Edited July 24, 2008 by bid

[SueB]

Hi Bid

 

you may be right...he's certainly improved with age and I've certainly never thought of Tom as having special needs.

 

He is definitely more articulate now, he was very pedantic in his speech when younger. He is getting a bit better at stopping and saying nothing, rather than just blurting out loud the first thing that comes into his head. He is getting more independant now and is taking himself off to college. He certainly isn't hyperactive now...infact the opposite, he could stop in bed all day if I let him lol. I just wish he was better at forming relationships/friendships.

 

The fact that I had a difficult birth and Tom was starved of oxygen was always thought to have contributed to something?? I think that's why his nursery and health visitor made issues out of his development, and to be honest there were issues. He was a bit late at walking and talking - he started crawling at about 18 months and walking by 2. But then he seemed to zoom ahead, caught up and then overtook lol.

 

But to be honest...all that became less important to me as he became older, we just got used to it I think. In addition, we had fantastic help and support from his school, which took pressure off me.

 

But hey...what will be will be.

 

Cheers

Sue

xx

[alanm]

Alan has made a good point for me to consider though.

Admittedly discrimination is an issue, but these factors are why I'm in favour:

- having had appraisals where I hadn't been disclosing my AS in the past and was told to "improve" at communication skills

Glad to be of help. Re your later post:

I have already made my mind up and will not be seeking a diagnosis, however, to be honest, I made that decision years ago when Tom was a lot younger.I think I have been looking for proof that I have made the right decision but looking at Tom now, I know I have. We have worked hard with his social skills and have got him to a level where he can work part time, catch a bus and do well in college.

That's fair enough if you feel it wouldn't be right to seek a diagnosis and for how well Tom is doing at the moment. On a job application form which asks if he has a disability it could still be as well to say yes, but note that it hasn't been formally diagnosed because it is so borderline. Even the Jobcentre hadn't asked to see documents of my dx, which are still with my parents, that may be more of an issue for someone who wanted to claim for "incapacity" though.

 

 

As for when they go for jobs and things, like Alan said, it can be useful to be able to get that support to get a job and be supported in it, and so that employers understand what is going on.

So far I haven't had any particular support to get a job but at the end of August I'll have been unemployed for 6 months, although I had my temp job in June as it was only 2 weeks that is short enough for the unemployed time either side to be totalled, and at this 6 month point I'll qualify for a programme called "WorkStep", designed to "help if you feel that you need a lot of support before doing a job on your own. It is all about meeting your needs so that you can get and keep a job (quoted from Jobcentre website and leaflets)." In my case I mainly need that support to find someone to take me on, someone to "go between" myself and the employer, to encourage employers to see that while I do have a disability with communication skills I do have good talents too. For the most part I shouldn't need a lot of support in the job once I have one, as I've proven my overall capability of work, as long as it is a more behind-the-scenes role where someone else would have the communication with customers and suppliers.

[Imposter]

Whilst I appreciate what Tally says about a lack of diagnosis helping to encourage self-reliance which is not neccessarily a bad thing. I also got a diagnosis as an adult - last year at the age of 26 - and similarly had developed many "coping" mechanisms.

 

However I would say by age 17.. your son should have developed the majority of coping mechanisms he is likely to need. So my advice from my own experience is:

 

GET A DIAGNOSIS NOW - If you haven't already (which from reading your post it sounds like you haven't).

 

Tom may be able to cope with life at the moment, living with parents...

 

 

But what might happen when he reaches 18 or 19 and goes to university... or maybe older and gets to an age where he wants to move out....

 

I went to university at 18 - (and it was actually only a few months after my birthday)... completely unprepared for it and ended up having what can only be described as protracted meltdown.. I couldn't - socially, organising myself... knowing what to do with the free time... etc... Towards the end of the year I was also worried about moving out of halls into shared "digs" with people.... I could barely live with my family let alone other people!

 

It was an absolute disaster... after a year in which I was back home at least every other weekend... and for the holidays - I bolted home - and transferred to a local university.

 

But I remain convinced had I had a diagnosis I could have got more support in settling into university, in organising myself, in getting help socialising. Perhaps financial support after the first year to help meet the extra costs of remaining in halls or renting alone... etc....

 

And even after university my employment history has been somewhat sketchy... largely because I've never had something to pin my "differences"/"problems" on.

 

Having got I now feel I can legitimately explain things to people, and only seek jobs that I know I can do - so jobs with lots of teamwork and groupwork etc... are out....

 

I've often thought since my DX if I had been diagnosed earlier when would I want it to have happened.

 

And the older I get the more I would have wanted to have been diagnosed by. But the one point that stands out is the point when I was doing A-Levels/Applying to University/Going to University - had I been diagnosed roundabout then, or before then I think it would have helped tremendously.

 

So I would advise you to go and get the diagnosis, personally.

 

[Imposter]

I would like to say that whilst he's coping now.. the older he gets, the more he will need to make choices, decisions - what to do with his time? what job to do? - the more he will need social skills - friends, neighbours, colleagues - the more organised he will need to be - especially if living alone, households chores, washing, clothes washing, buying clothes, ironing, food shopping, cooking, cleaning, insurance, tax, dealing with correspondence etc... etc....

 

He sounds not dissimilar to me...

 

at 17... I could catch a bus to 6th form, do my 6th form work, had a part-time job in a local pub (I only collected glasses and it was too busy to stand nattering for any great social skills to be required) etc...

 

 

But like I say... I went away to university and fell apart....

 

 

Tread very carefully as I'm 1000000% sure you will... but at some point Tom will move out, whether to go to university, or just to move to his own place - and that's when he may well be hit hard by his possible ASD.

 

 

[Karen A]

Hi Sue.

I am sure I am posting a comment that you will be very aware of but thought I would put my pennyworth in anyway. in response to some of the posts encouraging you to push for assessment.

 

Since Tom is 17 I am sure he would be considered old enough and able to decide on whether to persue a possible Dx himself.

I would think it very unlikely that anyone offerering an assessment would offer assessment to a 17 year old because the parents were requesting one.

I gather from your posts that Tom would not be intertested at present which would be his choice.

 

As I have posted here or elswhere Ben sounds very similar to Tom.

We are expecting to obtain a clear decision on Dx of AS [don't know what the decision will be] following a 3DI in September.

Camhs have agreed to further assessment mainly because Ben wishes to know whether he has AS.Ben is 10.

Karen.