New to Asperger's

[MaryBS]

DS (6 next week) was diagnosed on Friday. I've got a number of questions and would welcome some advice.

Firstly, about me. When they went through the diagnosis, and why they asked certain questions, I found I ticked a lot of the boxes too, probably more than DS. I asked about genetics and was told that yes it was "familial".

Hearing this dredged up many years of pain and heartache that I'd never shared with anyone because I just wanted to "fit in". I'd never had many friends, and couldn't understand why I'd lose them. I'd had irrational fears/phobias and with a lot of work had managed to conquer them, but again I felt embarrassed about them, so never talked about them unless I had to. There are countless things I could list. Each time I came up with a rational explanation about why I acted like that. I rationalise things to the point of obsession. Many other things...

The question is, should I go to the Dr and get diagnosed? It would settle things one way or another. But I'm a bit fearful of "having a label". But then if I did, then DS and I can stand together. I'm not asking you lot to diagnose me btw...

Secondly (and more importantly), my son. It seems lots of things will be put in place to help him deal with this. I've developed my own coping techniques over the years, so can totally understand what he's going through. But what can we as a family do? For example, I'd love to be able to teach him to ride a bike, but he just can't pedal, gives up almost as soon as he tries. I don't want to force it though. He struggles with cutlery and can't co-ordinate knives and forks.

Any advice would be welcome please. ATM I just feel like curling up into a ball, but that won't help anyone, least of all him!

First of all - hope you are feeling reasonably OK, it's a difficult time going to appointments/diagnosis etc.

Regarding yourself and diagnosis - what are you hoping to get out of a diagnosis? adult services are few and far between, but if you feel that an official diagnosis, rather than self-diagnosing would help you a lot in coming to terms with aspects of yourself/your past, then fair enough. I think that at the very least I have lots of AS traits - I don't want to go for a diagnosis to find out one way or the other, as depression/OCD are enough labels for me IYSWIM.

I wonder if regarding the physical aspect, whether your DS is likely to see an Occupational Therapist, as they could advise you further on how to help your DS.

Agree again re OT - it's been invaluable with my Dyspraxic son.
I have a friend who was diagnosed as Dyspraxic in her late 30s and I think it helped her a great deal - I've known her since childhood and she seems more at peace with herself and less self-critical than she's ever been. I also think that having come this far, if you don't find out about yourself you'll spend the rest of your life wondering - it would be better to know.

my dd1 (18yrs) has aspergers and i remember feeling lost when she had her diagnosis (she was 7 when diagnosed and i had never even heared of it)

i would continue to treat him as you're doing now - if he is happy and settled, dont change anything for him. my dd still cannot ride a bike or co-ordinate very well but as long as she is calm i really don't care about the other stuff.

As for you, i wouldn't try and get a diagnosis tbh. i believe everyone shows traits of aspergers at some point in their lives and it would only add to the guilt that you are naturally feeling (i tortured myself for a long while believing i passed it on to her)

i hope your son gets all the available help thats out there for him as things have improved somewhat since i went through the system. the help is by no means perfect but its better than it was, iyswim?

please don't beat yourself up over this just stay as you are and i'm sure things will be fine
good luck x

I think that a lot will depend on whether or not you think a diagnosis will help you in some way. My dh had a similar experience to you when our ds1 was dx'ed. The Paed told dh that she thought that he too was probably on the spectrum. Dh found it to be a positive thing and said that a lot of things suddenly made sense, eg his need for routine, his hypersensitivity to noise & light etc. It's now about 3 years later and dh is now thinking about seeking a dx for himself. He has been finding certain aspects of work more difficult, especially the social etiquette side of things and those irritating 'ice-breaker' type of initiatives when management get people to change desks every few weeks so that they sit next to different people. He's hoping that having an official dx might help, but still isn't quite sure.

I also agree with asking for help from OT. They gave me some good ideas for helping ds1 (7) who has similar difficulties to your ds. One of the things they suggested was a set of exercises that are designed to slowly help to 're-train' the brain. Ds1 also does some exercises at school which have helped him a great deal. He still has poor co-ordination but it's definitely improving.

Thank you all.

DS has been referred for speech therapy, which I've raised before as an issue. Now that he's been dx, its amazing how quickly he'll be seen (6-8 weeks, I've been told).

I've started to tell people who know him, and people have been very sympathetic, especially those who probably thought I should keep him under better control (!)

Yes, to some extent I wonder if a dx for me would help. It does explain a lot. At least I'd know, rather than wonder (and obsess) about it.

I struggle at work too socially. I'm "fortunate" in that 2 of the people I worked with who made my life difficult have left. I never "picked up signals". I find socially I generally get on better with men IRL, because (possibly? perhaps someone can tell me?) the social signals tend to be more obvious. Plus I'm a very logical person (my mother is always telling me I think like a man)

The biggest reason I feel I probably need diagnosing is because of what I'm doing at the moment. I'm training in my spare time to be a lay (non-ordained) minister in the church. I feel this is probably something they need to know about. I've discussed it with my vicar and he doesn't see it as a problem, but I think I need to discuss it with my course director. As with any sort of change, I react strangely to things. My last essay for instance, I flipped because I "only passed", my tutor (who I don't like) criticised the "understanding" parts of it, said I didn't answer the question.

Something else the Dr said, its harder to diagnose girls (and women) rather than boys. Anyone know why?

Thank you iwf.

Well, good news on my course. I spoke to my tutor from the last module (we chatted on the phone for 40 mins!), and she has given me a lot of support and advice. She doesn't think I need even raise it with the course director, unless problems with DS mean that I need extra time for assignments. She said she never saw anything in me to cause alarm, but instead "you are a super candidate, and will make a super minister. That's the truth!".

Talking to her really felt like she'd given me my life back. I'd felt lost and confused and like I'd completely lost my identity.

DS of course, is completely oblivious to it all. We had some fun questions tonight "why is poo brown", "and does wee come from drink? Even milk?"

Hi Mary,

My ds was diagnosed with Asperger's about 6 weeks ago and I just wanted to say hi and offer you my support any time you need to offload. Really liked the "even milk?" question - hilarious.

I think you should get a dx for yourself, why not - sounds like you're pretty sure that's what is going on and it may help you in all sorts of ways.

My brother and my cousin both have Asperger's so it looks like it's in my family pretty strongly. I guess it's just one of those things...not something you want to pass on to your lovely perfect child but nobody's fault. If it's any consolation, my consultant said that he feels reluctant when diagnosing Asperger's because he doesn't want to medicalise it as a "problem". "After all," he said, "People with Asperger's are very focussed, they are completer-finishers and they can do really well in life. Several of my colleagues have definitely got it". Which did cheer me up a lot. Sure you will be a lovely minister.

That's brilliant news about your course, Mary. I'm so pleased for you.

Mary, through my husband's work I've met a lot of vicars. They come in all shapes and sizes and some were most definately, what I would now term, aspergic. There were a couple who weren't natural people persons but were very close to God - had an inate sense of holiness (does that make sense) so people loved them because of that - you talked to them and felt you'd got through to the Boss. Even getting on a minister course is tricky and they are very selective. That in itself should tell you that you must have qualities that those 'in the know' perceive as being excellent for the profession. If you do have a slightly different 'take' on the world due to your aspergers then that will only enhance those qualities because allthough some doors may be more tricky to open metaphorically, others will fly open at the merest touch.

Good luck, You'll be brilliant.