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Rambling On…

Autism Acceptance means… — 04/02/2013

Autism Acceptance means…

By Karen Hillman

Fully accepting that my partner’s autism shapes her world, but does not define all of who she is – she is autistic and also a web developer, a gamer, a cat lover, a music lover, a brown-belt in karate, a geek, a great listener, a vegetarian, a wife, a sister, a daughter, a friend. Her autism does not mean that she has no empathy; in fact, she is one of the kindest, most sensitive people I know. It means that I have to rethink the way I relate to and express myself to her – I have to be clear, open and honest more than I ever had to – or wanted to – before we were together. This has been one of the most difficult and rewarding things I’ve ever done and I continue to learn, screw up, relearn, over and over…and she lets me.

Accepting my partner’s autism means that I need to socialize on my own, without her by my side sometimes. I need to watch out for her, to pay attention to make sure she feels included, is not too negatively impacted by sensory input or her environment. It means I need to be patient and understanding and that I need to try to explain things about the neurotypical (NT) world, much of which has no good explanation. Accepting my partner’s autism means that she also fully accepts me with all of my many flaws and idiosyncrasies. It means that I can revel and delight in the things that she shows to only me, because unfortunately, letting them out in an NT world can be embarrassing or detrimental to her.

Autism acceptance means that I have to understand why people who are autistic are angry, feel disempowered, and are sometimes distrustful and suspicious of NT’s. It means I have met many wonderful people with autism who graciously welcome me and teach me things about myself. Autism acceptance means I need to recognize that there are many different ways to communicate and to express oneself. I need to put myself in my partner’s world and not just expect her to live in mine. Autism acceptance has changed my life, exponentially, for the better.

Unsolicited advice to NTs out there with partners on the spectrum considering a giant life change — 09/13/2012

Unsolicited advice to NTs out there with partners on the spectrum considering a giant life change

By Karen Hillman

Uprooted by PurpleLorikeet @ flickr

Note from LB: This article was originally published on the Autism Women’s Network website and is reprinted with permission from the author. It is about Karen’s and my move here last year from Oakland, CA. We are both still learning to adapt to our busy lives here, and for the most part, we have both managed to find ways to recharge and have fun along the way.

As some of you may know, last year my partner Lori, who is on the autism spectrum, moved with me from Oakland, CA to Baltimore, MD so we could be closer to my aging parents. There have been a lot of ups and downs. The biggest “down” that has had lasting repercussions was that Lori lost her SSI (Supplemental Security Income). With everything going on, we didn’t think about the fact that co-owning our house would be considered an asset. What this has meant is that she’s had to work more than full time hours to expand her freelance web business. That has put immense pressure on her to take on way too many things at once. For those of you on the spectrum, you can imagine how difficult this has been. It’s way too much for her to handle and yet she is handling it probably way better than she (or I) thought she could. I think the “up” is that she sees how capable she is of running her business despite the challenges. That said, it’s still way too much. With SSI she was able to work more or less as she needed for the most part. I don’t think things are sustainable the way they are – she’s working too many hours without getting time to relax and turn off. Her brain needs a break. The other “up” is that now people in this area are starting to value her services and get to know her and I think that is a good thing. Sometimes I have to (almost literally) drag her kicking and screaming to things I know she will enjoy, even when she is overwhelmed. Fear not, this rarely happens and I try hard to pay attention to whether I can push or not – sometimes I’m wrong and I blow it.  I just know it’s important for her to sometimes be around people she can relate to whether it’s others on the spectrum or other web developers.

Some unsolicited advice to you NTs out there with partners on the spectrum considering a giant life change: do your research – financial stuff especially but also what supports are available where you are moving? What can you do to make things as comfortable as possible? If your partner is on medication and diagnosed “officially” or not and gets some kind of services, what can you do to help ensure your partner can continue to get his/her needs met for meds, counseling, etc? What resources are available in the new area? Be extra gentle, compassionate and understanding that uprooting may have an especially big impact. Get support for yourself – of course, this is a big life change for you too and you have needs as well. Try to find breaks in the action – do some things together that aren’t about pre or post-moving tasks, regroup. Help your partner find his/her way around the new place in the way your partner learns best. Spend some time exploring together. Try to build new routines as soon as possible if your partner finds that helpful. Help your partner understand and become accustomed to the norms of the population in the new area. Remember that your partner also has a lot to offer. Be honest and communicate clearly about your own stress and what you need. Most of all, give yourself and your partner time to settle in.

Please feel free to post about your experiences with life changes and what has been helpful/not helpful for you.