Seeking words of wisdom for a newly diagnosised aspie mom

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Long I've felt that I'm different than most, last week I discovered why. In my search for answers in regard to struggles my 7 yo daughter in school, I realized that she might be aspie, as well as myself. I sought professional opinion, and my suspicions are now validated , for myself. I have just begun the process of having my daughter evaluated for the same.
I wonder, now what? Im a single mom of 2, and am struggling to do it. Any pearls of wisdom, insight or valuable resources , would be greatly appreciated.

Keep in mind that as an aspie yourself, your instincts are probably pretty accurate when it comes to understanding your daughter. If you get advice that doesn't jibe with your own perception of her, take it with a grain of salt. And try to think about what worked with you when you were her age, or what you think might have worked if someone had tried it, and try that stuff out.

Welcome to Wrong Planet!

Glad you got a diagnosis - have been fighting for mine after fighting for my son's for years!

In terms of "what now" - I'm middle-aged. I don't really see my diagnosis as opening the way to big changes, other than that I can more clearly advocate for myself. I am hoping the diagnosis will come with better self-management tools (I am especially seeking help with executive functioning, particularly as pertains to task initiation - all of the advice out there seems to be written by NTs who have no clue how to help.)

If not, I hope that my diagnosis will help me see myself more clearly and be a little easier on myself: most of my life, I was shamed for behavior I couldn't control...and at least now I know why.

Welcome to WP!

Words of wisdom....well, first of all, there is nothing "wrong" with you or your daughter. You must never forget that. You just process things differently than most people. You've made it this far in life, there is no reason to believe that now that you have a diagnosis things are going to go down hill. As a matter of fact, things will probably get better because now you have an accurate frame of reference from which to work.

Many of us find out that we are not typically wired when we are trying to find help for our kids. You are in good company.

Thank you all for your comforting words! Input well received and greatly appreciated.

Listen to your instincts, but also keep in mind some of the "village" that helps your children will have some off ideas that seem wrong to you. If it doesn't strike you as grossly wrong or harmful, those things are worth letting slide. Life is much easier that way....and sometimes they can make it work anyway.

That is fairly similar to how I figured out I had Asperger's. Realizing this was what was going on helped me realize what things were the way I was rather than something broken or that I needed to change. By being able to stop fighting those things I was able to focus on the things I do well or on better work arounds for the things that don't work for me. IE: Instead of trying to deal with frustrating over stimulating situations I really didn't want to be in, I am finding ways to avoid them. Sometimes it means cutting something out of my life. Other times it means changing the way I do something to get that need met without putting up with frustrating circumstances. It also helped me re-focus on my career future.

Have you read our stickie, above, for parents who have ASD themselves? While the thread is very quiet now, I think it started off with some excellent conversations and observations about what it is like for a parent with ASD, and what one can do to work around some of the difficulties.

The most important thing I can tell you is that it's not as big of a deal as you probably think. You're still the same person you've always been and contrary to the claims made by organizations such as Autism Speaks, most people on the spectrum are perfectly capable of doing whatever life might demand (or at least no less capable than neurotypicals seem to be).

I'm sure your daughter's going to be just fine

I'm convinced that sharing this with your child is going to be enormously helpful to her. I know it has been very protective to my son's self-esteem that he is not the only one in the family who is on the spectrum-- it's also really helpful to him when I can relate directly to frustrations or confusions he's experiencing, and let him know that I "get it". It's also been amazing for me, and others in my family, to have all these epiphanies about our own behaviors, experiences.

It's been a positive thing overall, if you don't count the crappy crap I have to deal with from the "outside" world, like public school, or people who DON'T understand it, and want to treat it wholly as a negative. Like "normal" people who pity my son as a "disabled (NON-NORMAL) person". I actually enjoy being able to say to people who have something rude to ask about my son, "oh he has Asperger's, JUST LIKE ME." That tends to shut them up because they realize they are being ignorant and making stupid assumptions-- not just about my son, but about me as well, and what they think autism looks like and what it means. There is SOOOO much ignorance out there. That's the most frustrating thing of all-- not the autism itself, but the ignorance and rude behavior of others.

I have often wondered myself about an official diagnosis

I had an interesting experience trying to get one: I say "trying," it isn't completed yet - they are waiting for reports from my family and therapist.

I had to go to an autism center for children to be seen by a neuropsych who specializes in autism and could do the ADOS on an adult. I have to say - the ADOS is kind of a crappy instrument (though I can also see where it does work as long as you have an experienced and valid person giving the test.) The neuropsych said there is definitely autism there, but it is probably "sub-clinical." She whathat there is no way to tell whether "sub-clinical" is due to successful compensation, or whether it is just where I am on the spectrum, and whether the anxiety is driving the deficits or the other way around.

So, for those of you who are wondering what an ADOS looks like, it's basically kind of ordinary IQ-type tests and then the therapist chats with you for a while and notes any anomolies. They had me "read" a picture book with no words, and use a pile of random stuff to act out a story - those were the only two unusual things, the rest was kind of ordinary chit-chat. The weirdest question was "what do you look for in a friend?" which I was surprised to find I couldn't answer - I just don't think of people that way: I approach all people as friendly or interesting until they prove otherwise.

Honestly, I still can't wrap my brain around that idea - do NTs really categorize people into "like" and "don't like" categories before they even get to know them? No wonder the world is filled with racism and bigotry.

It was actually worthwhile: they did uncover some very specific deficits: for instance, I can easily learn random groupings of words, but once you give me two words and ask which one was in the group, I suddenly can't do it anymore. It doesn't sound like much, but I'm realizing that it's the mechanism driving most of my executive function failure. They also found a specific deficit in a specific kind of complex spatial problem-solving that rang true to me as something I struggle with in life.

It felt kind of weirdly unpleasant - even though I went to find this out and knew it was there - that I have very specific gaps in social skills - I "drop" my face (flat affect) sometimes when I'm not speaking, my gestures are limited to representational/emphatic gestures - not sure what to do with that information, I'm already spinning all the plates I can handle keeping up the nonverbal communication I AM doing, but at least I know it's there and probably looks weird to people who don't know me.

All this to say: these are very squashy measures and you really need someone with skill and experience to be able to pick out specific unusual communication habits or patterns of thought - so, if you are worried about your kid and you get one of those nonspecific diagnoses...find somebody else. The doctor should at least be able to present you with specific evidence of HOW they are measuring the deficits: which parts of communication are working, which aren't, which things are evidence of perseveration (their opinion is that the IQ stuff has to do with that) and which things aren't, what the specific strengths are and how those fit into the autism profile.

I found it to be very helpful, even if it was exhausting and left me feeling...exposed, for lack of a better word.

Actually, it was interesting: it was presented in an incredibly non-judgemental way. Basically, it can be difficult to tell where OCD ends and autism starts: they both have many of the same features, perseveration being the big one and the one I struggle with the most. Key was, in this situation, (unlike the last neurologist I saw who had no experience with autism and said I was "just anxious" in an incredibly dismissive way) the neurologist was clear that the root was neurological: she just could not tell WHICH neurological issue was out in front, so to speak.

It was also framed in terms of plan of attack: sometimes (and I've mentioned this in terms of my own son here often) it's better to treat it as OCD even if it isn't, because the things that work are the same - there are medicines that help with perseveration, and therapies as well.

I hear what you are saying: lots of clinicians and unfortunately most people approach anxiety with a kind of "get over it" vibe, and that is totally inappropriate. This woman was much more about getting information to figure out appropriate strategies to make things work better - and did not EVER suggest idiotic things like deep breathing or other "relaxation" BS - she had a good handle on how that doesn't work on certain neurologies.