Tuesday, February 15, 2011

The undiagnosed Aspie one....

We walked into the paedeatricians office that first time and sat down to discuss our son. The school had told us, "we don't acknowledge the school psychologists assessment of Aspergers as true until he also sees a Paed for an official diagnoses". 'How odd' we thought, but finally we had found one. He looked over the tests, he asked some questions, he diagnosed him there and then.

Aspergers Syndrome.

"Has anyone else in the family been diagnosed?" the Paed asked.

"Pardon?", we replied still gobsmacked by the affirmative of a minute ago and puzzled as to this new question presented to us.

"Does anyone in the family have Autism or Aspergers? is there a family history?"

"Um, no...not that we know of. Not diagnosed" we replied, puzzled as to where this was going.

"No-one with any strange characteristics etc?" the Paed continued.

"nope, not that we can think of" we replied as the conversation then turned in another direction.

That was over a year ago. A small, non-consequential part of a larger conversation that should have been lost in the fuzzy parts on the edge of my memories as being useless knowledge to keep but instead lodged itself there in the 'important things to remember' part of my brain.

As the year progressed, as I learnt more about Aspergers and how to help my son that one little memory would continue to pop up over and over again. Is it heriditary? I don't believe so. Is it likely that someone else has Aspergers in the family? it is a probable possibility.


Day to day life is so hectic that I find chasing after my children and dealing with my Aspie sons therapies that my life is full to the brim. Perhaps I don't spend enough attention, perhaps I missed all the signs, but then there was one family member who began to jump up and sit in the chair right next to that little question posed in my memory oh so long ago as a definite possibility of having Aspergers too.

We talked about it, we thought about maybe getting an official diagnoses, something which has not occured, something which I cannot push on that person. As my sons therapies go on, as my patience wears thinner, I find my tolerance wears even thinner!

The puzzle pieces they began to click together and I wonder. Can you say that someone has Aspergers even if they do not have a diagnosis? is it real only when you have that piece of paper that says it's so? I know this is something that has been debated over a long time by others before me and within the Autism community.

This other person, there is no doubt has Aspergers. He has the same traits as my son. He believes everything that happens is because of or a result of something he has done. He is incredibly intrinsical and has many of the traits. He is a living, breathing, bigger version of my son, almost a direct carbon copy. His story is not mine to tell.

Why even mention it then? because I am struggling to cope with all that is coming at me from both ends of the spectrum here right now. Spending hundreds on therapies for my son of which he works hard at, only to see that the bigger one continues to display those behaviours we are attempting to change in my son, with no care to change them himself. As that bigger one is someone my son upholds as an idol, I am fighting a battle to prove just why he needs to change those behaviours himself. Being spoken to with a voice of contempt and disgust when things are not going the way they deem it to be, tag teaming their times to do this, one after the other. Angry outbursts, expletives thrown out at several intervals when frustrations brew over, when they don't know how to handle or what to do with their emotions.

I am their safe place, their island on which to stand and let it all out because they believe that it is only with me they can do this. That I get it, that I wont leave them if they do. They put their mask on 'out there' and they conform 'out there' but on my island they don't need to. I can handle one....but two is often too much. I am human, it is breaking me.

So what do I do? how can I help someone who doesn't believe they need it, but so desperately wants life to continue the way it always has despite the fact that it just cannot? How? how? how? Yes, right here where I am...Aspergers can definitely definitely SUCK! :(


  1. I live the same tale and can relate. Neither of my two loves has an "official" diagnosis, but I live the tag-teaming. I am their safe place. So far, my husband is reading the same book as me (Quirky Yes, Hopeless No), and he himself could see that he exhibits all the traits himself. Getting him to work on that so he's a better role-model for our daughter? That's proving a challenge like none-other that I've ever encountered, and it definitely STINKS!

  2. Really hard one Jen.

    Can you minimalise the influence or is it too close a realtionship to distance yourselves?

    I think I would be taking the "you are a child and will do this, he is an adult and you can choose when you are older" line.

    It is the line I take with Boy 2 when he displays behaviour I have exhibited. Which I shouldn't, but I do. And he is my mini-me. NT with a dose of smart-arse.

  3. Spouse and Mother....I'm now following your blog and completely understand :(.

    MM..yep too close a relationship to minimise contact, we just have to work through it I suppose although I am finding it very hard to hide my frustrations. We have learnt that behaviours are decreased considerably this year at school, I am hoping this is enough motivation for the other one to start modifying his behaviour too as a role model! Fingers crossed because I am sensing this year is going to be a rocky Aspie one :( . I also like your line of thinking and I am guilty of displaying some of the undesirable behaviours myself, but I will then either do the same as in tell them when they are adults they can choose to ...etc...or I apologise and explain the emotions behdin my outburst or the way I spoke and talk about how I made them feel...ie. admitting fault/ demonstrating fault and talking about how it makes me feel to do that (better) and how they still love me (getting rid of the notion that you are weak or a lesser person and people wont like you if you say sorry or admit you do things wrong sometimes).

  4. Ah yes, the "undiagnosed one". Divorce is really high amongst couples with a child with autism. This may be one of the reasons (others are, of course, the endless stress, guilt, sleep deprivation, meetings with "experts", the needs of the other children, etc.). There is an up-side to divorce - you get to drive away from the screaming/yelling-obscenities/tantrumming "undiagnosed one"! Yay! The down-side is that you are yoked for life to this person because you share a child with a serious disability! that is, if your ex wants to co-parents (which mine does - this is both a blessing and a curse).
    I admire and respect those of you who choose to keep the marriage going. I couldn't and didn't.

  5. The undiagnosed one is possibly her husband. In my biased opinion you should respect both Aspies the way they are and the way they want to be. This does not mean having an excuse to misbehave on purpose or abuse people of course.

    They do not (and should not) try to change the mother to be like them, and neither should the mother try to change them to be like herself. Everyone should try to improve themselves, as an internal process, but why should the mother decide for everyone else what counts as "improvement"?

  6. I am the anonymous above and I would like to add this short video clip of an interview with
    Dr. Tony Attwood, leading expert clinician in the world about Asperger's. This one has his suggestion to parents:

    Please, please everyone with Aspie kids, please get more information!
    I strongly suggest more info from Dr. Attwood. He volunteers a load of his time to do interviews and there are several important ones on Youtube. His "Complete Guide" book also shows how well he "gets" and understands a lot of what makes individuals with Asperger's tick. Check the reviews on Amazon before buying the book though.

  7. That's tough. A particular difficulty with this situation results when the Undiagnosed One is old enough to self medicate with alcohol. Asperger's has an alcoholic mask. :/

  8. Oh Boy does this hit home!!!! The Undiagnosed one over here, dare I say is my son's father. And my story is very much like yours. I actually left my son's father during the time when my little one was being diagnosed, and realized what he must have been struggling with later on when I found out more information. It took a diagnosis to understand another "undiagnosed individual" i guess. Very powerful post. I am definitely in limbo myself!


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