Please help me reply to my mom's email concerning Autism Spectrum Disorders (ASD)

August 30, 2009 4:50 PM

My mom sent me an email today acknowledging for the very first time (that I am aware of) that she experiences symptoms of Autism Spectrum Disorder. I would like to write the best response that I can to her, with some links or information about possible next steps. I don't want to screw this up, please help me help her!

I have spent my adult life aware of her serious emotional and cognitive problems. My younger years with my parents were awful – I was rebellious and angry and unable to accept the serious dysfunction in our family. For the last 10 years I have been in therapy intermittently (taking breaks due to geographical and financial difficulties), where I have successfully learned to be accepting yet necessarily distant from both of my parents. There is no question whatsoever between all of my therapists and me that my mother suffers from severe Aspergers symptoms (almost every single criteria in the DSM IV fits her), as well as some emotional difficulties. My dad has some emotional problems as well, but they don't seem to be as severe as my mother's. They have a happy marriage, but its been lived blissfully in denial. My brother and I have suffered immensely. I have recovered, my brother hasn't. We are not close.

Fortunately for me, I learned to be very independent from a young age. I also do not display any pragmatic or negatively-impacting symptoms of ASD. I do however experience intense passions and focus, am able to see patterns in things that others don't tend to pick up on, and show an aptitude for understanding complex systems like language, puzzles, mechanics, etc. Basically, I seem to have some of the socially desirable features of ASD, with none of the social impairments.

I say all this, because in an email exchange today with my mom about language and ASD (I study pragmatics and sent her a link to an NPR talk in reply to a question she asked), she responded with the following, "Do you think you may be Autistic? I am wondering about me and my sensitivity to sound and light. Mom."

I would love to reply to this email in the best, most encouraging way possible. Maybe include a link to a place near her to get a professional test to determine if she has ASD, and where to go from there. Maybe a support group number, or a reason why it might be beneficial to understand more about the possibility of a professional diagnosis.

I am trying not to get my hopes up about this opportunity to help her. My mother has lived a lifetime of pain and confusion, not understanding why she miscommunicates with those around her (she often unknowingly offends others to the point where they scream, yell, or otherwise distance themselves from her). My dad literally shelters her from the world, sacrificing the needs of others or dismissing them in order to keep my mom calm, all the while praising her for being quirky. He means well, and wants the best for her, but this approach has prevented her from being able to stand on her own, seek answers and grow.

I am not close with any members of my family, and have been independently successful and healthy for some time. Through the advice of my previous therapists, I have limited my contact with family members to brief phone conversations and emails. This has done wonders for my relationships with them, and I don't wish to disrupt the balance. However, I see this email as an opportunity to take some important growth steps to self-realization...for all of us. I want to do it right.

MeFites: Please provide me with some advice, links, or ways to approach this subject that might resonate best with her and help her. How would you handle this situation? What would you write back?

FYI, I am female, early 30's, not currently in therapy due to financial constraints, but definitely reconsidering going back now to get some help understanding and processing these new developments. I'll be happy to provide more info as necessary. Throwaway email address: [e-mail]

posted by anonymous to human relations (8 comments total)

FWIW, intense passions and focus, ability to see patterns, and an understanding of complex systems are not, I think, a descriptor of ASD. They are a descriptor of someone who's got a really good brain. I find that autism spectrum disorder specialists seem to have this stupid idea that somehow being really passionate about something and being able to see patterns and understanding complex systems are automatically a problem when autism spectrum disorders, to my rather limited understanding of them, are wildly different and are actually marked, in my opinion, by social difficulties. Plenty of us who exhibit high passion, high focus, high pattern-recognition abilities, and high understanding of complex systems aren't in the spectrum. These aren't pathological traits; they're markers of intelligence. It ticks me off immensely that anyone pathologizes these.

ASDs are, to my knowledge, ridiculously difficult to diagnose. I suggest you point her toward a psychologist who knows about these things. I also suggest you have a stern talk to your dad.
posted by kldickson at 5:01 PM on August 30 [1 favorite has favorites]

It appears that whatever you have been doing has worked quite well for you--You might consider doing what ever is consistent with how you have been handling things. The first rule is to protect yourself--I would think a response that is courteous, kind and expresses a bit of humility would always be appropriate.
"Dear.......
I can not fully appreciate the struggles your recent diagnosis may have caused and might continue to cause. I hope and wish for nothing but the best for you and (Dad)
If I can be a resource for any additional information on ASD please feel free to let me know and I will be glad to research on line resources."

Personally, I would not provide specific information unless requested and then only links to on line resources. I would stay away from anything that is personalized--such as "How to live with ASD, How to live with a person experiencing ASD, etc." I would also avoid trying to make this a growth experience for anyone unless you are specifically requested to do so.
Keep on doing what ever you are doing and congratulations.
posted by rmhsinc at 5:17 PM on August 30

rmhsinc: there is no diagnosis. Her mother has simply mentioned a curiosity about it, and suggested more strongly that she thinks anonymous has ASD.
posted by jacalata at 5:23 PM on August 30

Here's how I'd frame it:

"Hey Mom, that's a really interesting reaction you had to the ASD stuff. You know, I wondered about the same things myself. I actually talked to a doctor/therapist/psychiatrist about it, and while it's clear that I'm not ASD, I learned a lot of interesting stuff about myself in the process. It sounds like you might be curious about doing the same, given what you wrote about your sensitivities. If you want to check it out, you might find a professional to talk to via XYZ organization."

In my opinion, this allows you to 1) address her question about you, 2) frame it non-judgmentally, and 3) provide her the appropriate resources. It'll also allow you to follow up with her in the future, by chattily asking if she's ever looked into those resources you sent. I'd stay far, far away from the more fraught aspects of the topic for now, such as how it impacted your childhood and your current relationship with her.
posted by amelioration at 5:36 PM on August 30 [11 favorites has favorites]

The way I read this, anon believes his mother has Asperger's. To support this theory, anon cites that anon's therapists agree (although they have not met the mother). Anon emailed a link to his mother about the autism spectrum disorders, and the mother asked if anon believes he is autistic. She then says she wonders if she, herself, is autistic because she has sensitivity to light and sound.

To my understanding, nobody in this family (the poster, the mother, father, or brother) have met with a therapist or diagnostician and as a result been officially diagnosed with anything in the autism spectrum.
posted by Houstonian at 5:39 PM on August 30

Amelioration, I think, nailed it. A non-judgemental, encouraging dialog that doesn't "diagnose" but encourages the mom to pursue her curiosity is a great, not threatening or intrusive reaction in my opinion.
posted by mazienh at 5:51 PM on August 30

I agree with amelioration, that's a great way to respond (although I don't know if it's a good idea for family members to share the same therapist). Just be careful, anon, that you don't put too much stock in the idea that your mother will follow up/grow/change/be "helped" by this. It sounds like idle curiosity on her part, and hopeful yearning on yours. Protect yourself.
posted by headnsouth at 7:10 PM on August 30

Anon, please be careful of your intentions and be really self-critical before you write the response. I am the long-term partner of an Aspie, and I "ennable" him to the extent that he fuctions well in his work and private life, although not always. When he doesn't it causes serious problems for all our family, and this, plus the way I've had to respond to it, has had long term impact on our children. As they mature we're counting the costs and thankfully, it isn't remotely as severe as what you went through. I'm saying this to genuinely respond to the anger I sense is just below the surface of this question, and because I'm concerned that this simple scenario may be the tinder.

You've done remarkably well to write with the kind of insight you do, considering your upbringing. You have every reason to be angry as the parents who were meant to nurture and love you unconditionally for whatever variety of reasons & reactions to their own circumstances, didn't.

Amelioration's response sounds really good and non-threatening, but from experience with Asperger adults, especially undiagnosed, and from the amount of detail (which I accept you probably gave because you are posting anon) about how you would like your Mom to look into a possible diagnosis the effects it has, I strongly suspect you want her to realise the damage it has caused you, and you want some resolution for the feelings of anger I mention. I may be completely wrong, and if so I truly apologise, but if there is even the slightest hint of that, please reconsider. You can't use your Mom as therapy, not because it wouldn't be right, although you need to consider that, but because I don't think it would be useful in your healing.

If you send that message and the response is negative (upsets you, undoes any of the progress you've made to date) then disengage as you practiced in the past and please, please get back into therapy. As the mother of a 19 yr old whom, I have no doubt, has been damaged by her parents being an Aspie & the ennabler, can I say how incredibly proud I would be to have you as my daughter. If there is anything I can do to help, please don't hesitate to MeMail me.

I really hope this first contact develops into something that has all the hopeful implications I see in your post. But please be prepared for the chance that it doesn't. The work you've done on yourself is too hard-won to lose it in thinking about other's needs right now. Please look after yourself first.
posted by Wilder at 4:20 AM on August 31 [2 favorites has favorites]