Monday, September 14, 2009


Autism isolates, in more ways than one.

It isolates me from my peers, who are going off to get jobs, rent apartments, and enjoy relationships. I'm still struggling to work 16 hours a week. I'm nowhere close to being ready to live on my own... even in college, I couldn't handle taking my medications and getting them refilled on time. I would forget to eat and paperwork would stack up to insane heights, with me too anxious to approach it and not knowing what to do with it when I did. Relationships? As in, with a boy? Sometimes, I wish for one but I'm so not there yet. I want to be someday, but it's not yet, and please don't hurry me.

It isolates me from meeting new people. After the church service every week, everyone goes downstairs to talk and enjoy each other's company and eat desserts. Never mind that desserts tend to include gluten and therefore I can't eat them, I would really like to actually meet the people we've seen in church for the past year. The problem is that after 90 minutes of being quiet, sitting still, and listening, and then going down to a small-ish room that is packed with people, I'm not the easiest person to meet. I usually have some kind of fiddly toy in my hands, eye contact is long gone, and words are few and far between, in that kind of environment.

Autism also isolates me from my family and close friends. When I lose my words, it's all but impossible to communicate with them. Yes, I can often still get out "stop it" and "okay," but the things I really want to say, the things that make a relationship, that make me, are gone. I so badly want others to share happiness with me, but the way that people do that with one another is so complicated. My way is straightforward: my cat. I bring my cat to my mom. If my mom would just pet her, wouldn't she be happy? I can't understand how my cat doesn't make everyone as happy as she makes me. It doesn't make sense. I'm alone in my happiness. I want to share joy with others, but so often, I'm alone with my frustration, my fear, and my joy.

So part of "being in my own world" is that I want to be, and part of it is that autism leaves me there without a choice.


  1. I have just written about this too (though it isn't publicly available)... about how alone I feel, about how I wish there was someone who just saw me for me, without the need for words.

    I feel very sad right now.

    I'm sorry I'm not able to offer any words of encouragement.

  2. Keep writing, Lydia. It is probably the most important thing you can do for yourself. By giving words to your feelings you are making them concrete for us who cannot otherwise understand your inner life.

    I would talk to your vicar/priest/pastor, whoever s/he is called at your church and do 2 things. Firstly explain how you would like to join in downstairs and how difficult it is and see if he can sort out some peer support for you so you can be there without worrying that people don't understand that your words are gone. Secondly aske him/her to read this blog.

    When I say talk it could just as well be a letter. If you write it all out, just as you do here, it gives him/her a window into how to talk with you and what is going on when you find it hard. Hopefully s/he'll visit you at home with your lovely cat and you'll be able to have a meaningful dialogue.

    I wish I could just pop over the Atlantic and have a quick "chat" on your behalf with a few people........!

    Chin up, old bean. As they say around here!

  3. Lydia you are such a great person to know. It's on line not face to face but I like you, and I know I wouldn't be put off by anything you do in person. Maybe your mum could help get a circle of friends like Michelle did for Riley. Don't stop writing and keeping us in your loop.
    Huge hugs to you and your cat!

  4. Hi Lydia! Just wanted to ask you a sensory question - Scrumpy has to have an EEG done due to her epilepsy but she has a very sensitive head and so far has not been able to tolerate the contacts being attached. It's a scratchy paste and then a flat disk is stuck to that and there's about 25 altogether over her head. Do you have any good ideas for helping her get used to the sensation and being able to have this done? It would really help in the treatment of her epilepsy, and obviously I'm keen to have her on as little medication as possible.

  5. Lydia, I like Annicles response. Our school systems are beginning to recognize the number of autistic children enrolled. They've set up a "Buddy and Me" program where "typical" children can sign up and become buddies with someone who needs help navigating the social world.

    Also, in the movie "Mozart and The Whale" the main character set up his own social network of other adults with high functioning autism. Have you looked into whether there is a group like that around you?

    I'd encourage you to believe that it is not just autism which isolates. I know a lot of "typical" people who feel isolated like you do. God made us so that we need others. Remember how before sin even entered the world God said, "It is not good for man to be alone." God himself is in perfect relationship with himself as Father, Son and Holy Spirit.

    However, there are a lot of reasons why people feel so isolated now. Technology, Internet, social networks, Twitter...all these things give us a false sense of relating to others. But these relationships lack the intimacy that relationships need and what we all desire. We all desperately need to be unconditionally love and accepted. The first place we should look to fulfill our need is in Christ, who is more than sufficient for us. Then ask Him, to give you wisdom about how you can go about making friends. How you can be a friend to others even in your weaknesses (losing words, not making eye contact, etc.) Remember He promised, where you are weak, He can make you strong.

  6. After church, and it other group social situations, it does really help to have Leigh with me. She's particularly good at allowing me to be involved in the conversation even if I've lost my words. The one time we went downstairs, I was so overwhelmed I didn't know where to go or who to see or what to do, so I kind of followed her lead. She talked, and I mostly stayed nearby. Anyway, as for having a "buddy," she's great for that.

    Corrie, I never thought of it that way... that God will make me strong in THOSE weaknesses, too. That's something that I'll keep with me forever.

    Amanda, I had to have an EEG done, too. This might be counter-intuitive, but try brushing her hair with a brush. Then, move to a comb. Keep doing it. Do it especially long RIGHT before they do the little sensors. It will desensitize her head. If you start ahead of time, she'll be used to the feeling, and if you do it right beforehand, her nerve endings will be desensitized. Also, give her ANYTHING for her hands... any kind of sensory toy. A squishy ball or something?

  7. Lydia, thank you for writing about this. It really helps me to understand my son in a deeper way. He is very verbal but often he suddenly stops talking and gets very angry if he is pressured to communicate. Because he is very high functioning and can communicate I am not always as gracious as I should be when he suddenly stops. I guess I have a hard time with sudden changes too! Arg. I have so much to learn. :) Naomi