Hello, where to begin?

[Darren_T]

Hello all,

 

I'm a very nearly 40-year-old father of four children aged 7 (twins) to almost 11. I've found my way here because my daughter (the almost 11 year old) was recently diagnosed with Asperger's Syndrome. So we've been on the emotional rollercoaster with her over the last year or so, which I'm sure is familiar to many here.

 

The short version of the story is my daughter's primary school teacher recognised characteristics in her she'd seen previously in other AS children and raised it with us, and helped us to start the ball rolling on getting her assessed and eventually diagnosed. The good news is that now she has the diagnosis in time for her moving to secondary school in September, and we've already had discussions with both schools about making sure she has the support she needs to help her to cope with the new school and with her own difficulties. It's also helped us at home to find better ways of dealing with what we previously thought of simply as her bad behaviour. This is all very positive for her and I'm really confident that she will be able to thrive. She is very bright but needs to be focused and if she loses interest she will just do her own thing rather than whatever she's supposed to be doing. She also gets stressed very easily over what seem like trivial, unexpected things. I don't suppose this sounds too surprising!

 

The interesting thing for me is that when the teacher first raised it with us, my wife confessed that she'd had a suspicion that our daughter was somewhere on the spectrum (my wife is a nurse so she already knew about these things). I had no idea at all - I just thought she was a normal, if very clever, and rather highly strung, child. And as I started to learn about AS I realised that I thought she was normal because she was just like me! Or rather, an exaggerated version of what I was like at her age. And so in parallel with going through her diagnosis, and learning about how to help her and to improve things at home, I've been re-evaluating myself and my own life. I'm not sure I'd be classed as AS because my symptoms are milder than my daughter's (or I've learned to live with them), but I think I'm somewhere near. It explains a lot about a lot of things I've done over the years, and ways I've behaved especially in social situations, that I never really understood at the time, and regretted for years afterwards. I'm toying with the idea of trying to get myself formally assessed but my thoughts aren't really straight on that at all.

 

I'll post more when I've got a bit more time - it is after midnight after all, and I've got work in the morning! - but as I've just registered I wanted to say hello and introduce myself.

[lindy2017]

Hi, Reading your story was like mine at this moment although my son whos 11 hasnt had dx he has been seen by the educational pschologist but unfortunetly i didnt get a chance to see him but his teacher thought he ahd aspergers .....i am now worried about secondary school......he says hes scared to go there i ahve to take him out of pimary school 4 weeks ago as he wasnt coping .........i teach hhim at home now.....he is alot happier so i dont know what to do next ....he has a visit at secondary school on friday to get the usual assessment for which class they should be in thats if i can get him there....

[Tally]

Hi Darren, and welcome to the forum,

 

I hope your daughter's transition to secondary school goes well.

 

A lot of parents find out about their own Asperger's through a child's diagnosis. The condition is probably genetic in part, so it's not surprising that some parents turn out to have the condition now that it is better understood. Getting a diagnosis for an adult is much harder than for a child, so you might want to think a bit longer about whether you think you actually do have Asperger's before you go through the process. It might be that you are what some people call an "autistic cousin" meaning that you don't quite meet the diagnostic criteria but relate closely to many of the traits. There is very little support available to adults with AS, so you might find that all the things you could do with the understanding a diagnosis brings are things you could do without needing it formalised anyway. On the other hand, a formal assessment is the only way to know for sure, so you might feel it is important to make it "official," for your own peace of mind . . . so no real answers, and probably more questions from me! But welcome to the forum. I hope you find it helpful.

[Darren_T]

Lindy - it's probably a bit late now but it sounds like you should get your son properly assessed and diagnosed. Our limited experience is that once you get the diagnosis all the formal support mechanisms swing into action in the schools.

 

Our worry was that our daughter would get thrown into the chaos of the new school without any special support and that she wouldn't cope very well, and that she would end up getting "marked down" and graded into a lower class/set than she ought to be in, which would just make her more bored and disengaged and make the whole thing worse in a vicious circle. As it is the school now has her formally identified as a special case, and they have official confirmation from her primary school that she's a brain box (they may have used different educational jargon) but doesn't always translate her ability into her written work and formal assessments. So we're happy now that she will be in the right class for her innate ability but with the support she needs to help her deal with any issues and focus on what she needs to be doing.

 

Having said that, I think she is a mild AS case compared to many - she is fine with actually going to school, although lately she is getting bored with primary because it's not stretching her, despite her teacher's best efforts! So she is really looking forward to moving up in September, she's looking forward to the challenge. (Another characteristic that reminds me of me).

 

Tally - thanks for that. I think I'm in exactly the quandry you describe. I feel like I'm on the verge of finally understanding something about myself, but I'm not sure what I'd do with that understanding! I'm part way through Tony Attwood's book and he says (I think) that something like 1/3 of AS children have a close relative with many of the symptoms if not necessarily enough to be fully diagnosed themselves. I suspect I probably fit into that category if not actually being AS.

 

Part of my personal issue is that I have a good job and I'm the main family breadwinner. However for the last few years I've been becoming increasingly disengaged from my job. I'm utterly bored by it and like my daughter, I find it hard to concentrate and put in the effort because it just doesn't interest me. However, I'm too old now (and with too many family responsibilities) to switch career to something that does interest me - there's no way I could start a new job with no relevant experience and earn what I do now. So I have to stick with it to support the family even though it's driving me mad. I feel like a wage slave, and not even a very good one. So another worry is that even as I stick with it, my lack of enthusiasm will sooner or later lead to me getting the boot anyway. My options are to pull my socks up, jump ship, or wait to be pushed. The one that's best for the family is option one, but that's the worst one for me, and one that I'm finding more and more difficult.

 

Sorry if this is a bit of a stream of consciousness ramble. I think there's a lot I need to get off my chest! I'm not sure whether this is AS related or I'm just having a typical mid life crisis. One thing's for sure, I'm more confused now than I ever was as a teenager.

[baranigirl]

Hiya

 

Your story is interesting, I joined here as my partner is undergoing assessments for AS and I wanted to find out more information about it, we do not know if he would be fomally dx as he shows traits, but I do not know if they are enough for a dx iyswim. Have gone through his childhood with his mum over the years and he had lots of problems with social skills and school (refusing to go at all in secondary) and more recently some mental health troubles which have ended us up here. Somehow his job (not current one but the one before) caused him most issues, lack of routine and structure being the worst part for him. He too will disengage from his work (the one before that) feels victimised and 'about to be sacked' and jumps ship before the inevitable, meaning the family income has reduced drastically in a very short space of time.

 

To help with the financial problems I have picked up 2 additional jobs (I now have 4) which although brings in something towards the lack of his income (he does work now but very low paid no stress job) means we pass like ships in the night and he has to try and do some household chores for the kids which he cannot do when under pressure, so my 16yr old daughter is really the main carer for her siblings whilst I am working and they are not in daycare (my hours fluctuate anywhere between 24 hour day)

 

The one night my daughter has an activity my partners mum comes and supervises him whilst he supervises the children, her role is back up for those days he cannot cope and to reduce the pressure for him!

 

Think I have gone on a bit of a tangent here but our 4yr old is showing some triaits, originally put down to bad behaviour like your DD and although all my 4 kids are parented the same way she does not accept family ways and rules or appear to even understand family social dynamics. Nursery have just picked up on her lack of social skills (even though I have been asking since last December when they told me she never spoke a word whilst there) and I am taking her to see the GP next month for him to assess my concerns and put any wheels in motion before she transfers to primary in September. I have also arranged a meeting with the primary HT to discuss some concerns I have about the admission procedure in September and how unsettling it will likely be for her (it changes every week for 4 weeks) and what we can do to work together to make the transition easier for her.

 

As others have said getting a formal dx is difficult and I do not know whether DP will get a dx or whether he just sits somewhere on the spectrum with a bunch of traits pointing him there or whether they will tell him it is nothing at all, but for now we have made changes to help him wih routine and structure plus his aggression will not be tolerated (it never was but we are working on ways to help him not get there in the first place with tips from this forum)

 

Sorry for the waffle, but remember you are not alone

[got the tshirt]

Hello, I am in my forties too and have a child currently being assessed for posssible asspergers and another who i believe is proabably on the spectrum somewhere. They certainly have a lot of traits!! As I have learned more about it I know that she gets it from my side of the family. I really strugled at school and have pretty rubbish social skills. My father is similar. I was in the fortunate position of being able to take some time out from work and on returning took a slightly different career path but now I am bored again so I know where you are coming from.

Your daughter was lucky to have a teacher with some knowledge of AS, I struggle to get my Dd3's teacher to understand what her difficulties are. But maybe that is me not being able to express myself verbally.

Hope your daughter gets on ok. at secondary, my Dd1 was much happier at secondary because in the top set she was with like minded kids who wanted to learn and her phenominal [sp] memory and enthusiasm made her very popular with the teachers.

Sorry really long reply to your post!!!

[lindy2017]

Lindy - it's probably a bit late now but it sounds like you should get your son properly assessed and diagnosed. Our limited experience is that once you get the diagnosis all the formal support mechanisms swing into action in the schools.

 

Our worry was that our daughter would get thrown into the chaos of the new school without any special support and that she wouldn't cope very well, and that she would end up getting "marked down" and graded into a lower class/set than she ought to be in, which would just make her more bored and disengaged and make the whole thing worse in a vicious circle. As it is the school now has her formally identified as a special case, and they have official confirmation from her primary school that she's a brain box (they may have used different educational jargon) but doesn't always translate her ability into her written work and formal assessments. So we're happy now that she will be in the right class for her innate ability but with the support she needs to help her deal with any issues and focus on what she needs to be doing.

 

Having said that, I think she is a mild AS case compared to many - she is fine with actually going to school, although lately she is getting bored with primary because it's not stretching her, despite her teacher's best efforts! So she is really looking forward to moving up in September, she's looking forward to the challenge. (Another characteristic that reminds me of me).

 

Tally - thanks for that. I think I'm in exactly the quandry you describe. I feel like I'm on the verge of finally understanding something about myself, but I'm not sure what I'd do with that understanding! I'm part way through Tony Attwood's book and he says (I think) that something like 1/3 of AS children have a close relative with many of the symptoms if not necessarily enough to be fully diagnosed themselves. I suspect I probably fit into that category if not actually being AS.

 

Part of my personal issue is that I have a good job and I'm the main family breadwinner. However for the last few years I've been becoming increasingly disengaged from my job. I'm utterly bored by it and like my daughter, I find it hard to concentrate and put in the effort because it just doesn't interest me. However, I'm too old now (and with too many family responsibilities) to switch career to something that does interest me - there's no way I could start a new job with no relevant experience and earn what I do now. So I have to stick with it to support the family even though it's driving me mad. I feel like a wage slave, and not even a very good one. So another worry is that even as I stick with it, my lack of enthusiasm will sooner or later lead to me getting the boot anyway. My options are to pull my socks up, jump ship, or wait to be pushed. The one that's best for the family is option one, but that's the worst one for me, and one that I'm finding more and more difficult.

 

Sorry if this is a bit of a stream of consciousness ramble. I think there's a lot I need to get off my chest! I'm not sure whether this is AS related or I'm just having a typical mid life crisis. One thing's for sure, I'm more confused now than I ever was as a teenager.

Hi,Thanks for the reply i forgot to say i have 3 older children and they have the aspergers traits not dx.......my oldest is 31 and has learned to live with it....his obsession was computers so he has his own IT Company.......my dughter who is 24 has 2 children she finda it hard with scial skills but is learning....i have a 20 year old son at home he is learning mechanical apprentisceship his obsession is cars he ahd 6 in the last few years.....now i have to speak to the school and see if i can some support... my husband is in denial at the moment so makes it hard for me ......this site is good for support and info......i am grateful for your reply.........speak soon lindy

[Darren_T]

Thanks for all the replies.

 

This struck a chord with me:

 

his aggression will not be tolerated

 

For my first thirty years I was very even-tempered and placid, apart from two situations, which were both caused by me feeling overwhelmed and unable to cope with particular subjects I was studying. The first was O-level English Lit aged 15: overwhelmed by David Copperfield, feeling I had to "learn" a 900-odd page book - which I eventually threw in the sea on holiday after sitting the exam! The second was in my third year at university, aged 20 - having sailed through school I suddenly realised that, unlike A-level maths and science, degree-level engineering was not something I could do instinctively, and I was faced with trying to learn loads of really complex maths which no longer made any logical sense to me.

 

In both cases I sank into a kind of angry depression which I only vaguely remember. Both times my family helped me through it and my wife (who was then my girlfriend) tells me that I made her life a misery on the second - we'd been together two years and it was the closest we've ever been to splitting up, and I can hardly remember it! I was never violent but I think I took my frustration out on her verbally, probably over months.

 

But apart from those two specific periods, I was always calm and basically happy-go-lucky. Until the kids came along. Since having children (specifically, since around the time the oldest was a toddler) I've turned into someone who is frequently angry when I am with them. I don't like being this way but I don't know how to deal with it or fix it. I love them all but I get irrationally angry with them and it's not their fault! If I get to their bedtime without having had a screaming fit at some point (often incoherent or even unable to form words) then it's been a good day. Again I've never been physically violent toward them but it has a physical aspect for me - often I will drop to my knees and squeeze whatever I'm holding until it breaks, or dig my nails into my palms. It's like I have to damage something but I don't want it to be them! I basically turn into the Hulk minus the green skin and muscles. In my own mind I call it impotent rage.

 

Since looking into AS through my daughter's assessment, and recognising several AS characteristics in myself, I'm starting to think that this is one of them. I get irrationally angry at "nothing in particular" when I'm not in control of my life. And looking back, I've always felt in control apart from those two times when I was overwhelmed by studying, and ever since having kids who were old enough to decide to do what they wanted to do, rather than what I wanted them to do. I can't control the kids, nor do I want to, but subconsciously it drives me mad.

 

[Sammysnake]

Hi Darren and welcome to the forum. I have a daughter who is 9 and was recently diagnosed although I had known for years there was 'something' and had come to the conclusion it was AS. Like your girl, mine is very clever but 'highly strung' but responds really well to the millions of strategies that are out there to support her with once we understand where the difficulties come through. Beth's teacher assessments put her well above average but she gets very stressed at the mental and physical processes of writing which puts way down the standard and quantity of work she is actually producing. School now let her use a laptop for some longer pieces of writing and have written daily time into her timetable for her to practice touch typing. This means for some pieces of work she is able to show what she is capable of with the stresses of handwriting taken away.

 

We both feel incredibly relieved to have the diagnosis. As you've said, it opens up opportunities for our girls to access support to have a better time at school and achieve closer to their real academic levels. It's brilliant you've got sorted before the transition to Secondary school so now they can ensure there is a really good handover and support in place when she arrives. Good luck - this is all a bit new to me too and let us know how you get on .

 

Sam

[ridvan]

Hi Darren and welcome to the forum. I have a daughter who is 9 and was recently diagnosed although I had known for years there was 'something' and had come to the conclusion it was AS. Like your girl, mine is very clever but 'highly strung' but responds really well to the millions of strategies that are out there to support her with once we understand where the difficulties come through. Beth's teacher assessments put her well above average but she gets very stressed at the mental and physical processes of writing which puts way down the standard and quantity of work she is actually producing. School now let her use a laptop for some longer pieces of writing and have written daily time into her timetable for her to practice touch typing. This means for some pieces of work she is able to show what she is capable of with the stresses of handwriting taken away.

 

We both feel incredibly relieved to have the diagnosis. As you've said, it opens up opportunities for our girls to access support to have a better time at school and achieve closer to their real academic levels. It's brilliant you've got sorted before the transition to Secondary school so now they can ensure there is a really good handover and support in place when she arrives. Good luck - this is all a bit new to me too and let us know how you get on .

 

Sam

 

Hi. Why don't you do the Aspie Test online? Ok, it might not be 'definitive' or even scientifically 'valid', but it may help you determined to find out one way or another? I scored high on this test, whereas my wife had virtually opposite scores to mine! You'll need to do the test to see what I mean! Anyhow, I'm now awaiting a private consultation with an expert. Go to this link to do the test: www.rdos.net/eng/Aspie-quiz.php

 

[Darren_T]

Hi. Why don't you do the Aspie Test online? Ok, it might not be 'definitive' or even scientifically 'valid', but it may help you determined to find out one way or another? I scored high on this test, whereas my wife had virtually opposite scores to mine! You'll need to do the test to see what I mean! Anyhow, I'm now awaiting a private consultation with an expert. Go to this link to do the test: www.rdos.net/eng/Aspie-quiz.php

I just did it, and this is the result:

 

 

Well at least it's consistent with what I thought!

 

Edit: Hmm, why won't the image work? Oh well. It says I'm 140/200 on AS and 65/200 for NT. I'm "very likely an Aspie" apparently.

Edited May 22, 2010 by Darren_T