Growing up with Asperger’s: A Sibling’s Perspective

 As parents we wonder what the impact of Asperger’s Syndrome will on the siblings of our Aspie children. Are we giving them enough of our attention? Are we asking too much? Do their needs take a back seat to the more urgent (or vocal) needs of their sib?

I had an opportunity to ask these questions when I was virtually introduced to Elizabeth Granby, an exceptional young woman who is pursuing a career in developmental disabilities as a result of her deep love for her brother, who was diagnosed with Asperger’s when he was a teenager.

Elizabeth Granby on her brother: "I don’t think there’s anybody in the world who can make me laugh like he can."

Elizabeth recently completed an internship at Holland Bloorview Kids Rehab inToronto and sat down to speak on the phone with me one evening after work.

 Tell me a bit about yourself.

I started off studying media studies and worked in the field for a few years, but it wasn’t where my heart was. 

My brother’s experience made me want to learn more. I feel like Autism Spectrum Disorders are a bit overlooked because they don’t necessarily fit into development disabilities and therefore they don’t really get the support that they need – or the right kind of support.

I’m really passionate about my work now and I want to eventually focus on how to expand services available for people with AS. 

Tell me a bit about your brother and your relationship with him?

 He is 22-years-old and even though he is my half-brother, and there is 10 years between us, we couldn’t be closer. He’s one of my best friends.

He lives on his own now in an apartment that’s close to my parents and he has a support worker who checks in with him once a week.

Right now he’s working on trying to find a job. That’s been a challenge and he tried using different agencies to help. With one agency, his co-workers knew it was a so-called ‘special job’ and they teased him. Now his support worker is focusing on his gifts – like music and wrestling – to try to find a more suitable job. It’s really important to him that he finds real work.

 How would you describe growing up with a sibling with Asperger’s?

It was always interesting. There was never a dull moment. My brother and I are really close and always have been.

It took a long time for the doctors to find his real diagnosis. When he was really young said it was ADHD, then they changed it to Tourette’s Syndrome, but my mom never felt that was quite right. He 14 or 15 when they finally said Asperger’s Syndrome. We started reading more about it then and said ‘Yes, this is exactly what it is.’ It was a relief to finally have a name for it.

I’ve always been a nurturer and that’s what I did with him. When he was young, he got anxious very easily and things could really set him off and start him pacing. I would instinctively grab him in a hug and hold him until I could physically feel him calm down.

What did you learn from the experience?

It really taught me to be flexible. It made me learn early on to be adaptable and go with the flow.

As I teenager I think I felt it more because I required more of my parent’s attention. I got good grades and didn’t cause too many problems. At that time being so flexible became a bit of a challenge.

I spent some time with my grandparents off an on, getting one-on-one support from them and that helped. They always talk about respite support for the family, but it’s sometimes siblings who need it too.

What was the most difficult about the situation?

Sometimes having a brother with AS can make our relationship a little one-sided. We talk on the phone every day. I spend lots of listening to him and supporting him, but I don’t always get the typical support back and that can be a challenge.

As I’ve gotten older I’ve realized he does support me and love me. But he shows it in different ways that other brothers and sisters might. Sometimes I have to look for it.

He knows this is something he needs to work on. When he calls me on the phone now he knows he can’t just launch into his stuff…he asks me how I am. We’ve been working on that for a year. He’s really trying to work on the one-sidedness.

What was the best part?

The laughter. I don’t think there’s anybody in the world who can make me laugh like he can. We both enjoy the same things like live music or funny movie. Just having a good time.

How is your brother doing now?

After he left high school it was hard. He went to community college but nothing seemed to be sticking for him. He would stay up half the night playing video games. He wanted to move on to the next phase of his life but had no idea how to go about that.

When he started looking at his special interests things started to change. He loves wrestling and he started taking lessons and making friends there. On New Year’s Eve my Mom and I were on the phone crying because for the first time he was out with his friends.

What advice would you have for parents who are struggling to parent two different kids in as consistent and fair a way as possible?

Communication is really important. You’ve got to open up those channels and keep talking with them. My parents actually got some great insights into my brother from me because siblings know their sibs in a different way. 

We also had a ‘no lie’ rule after my parents tried to protect me from some difficult information about my brother. I felt really excluded and we all realized that covering things up only made them worse.

 It was also okay to have different rules for different kids in our house – we tried not to keep score! We appreciated being treated like individuals.

My parents would also do special things just with me from time to time to give me a little one-on-one attention. They knew us well enough to see the signs and know what we needed.

Are there any resources you would recommend?

The Complete Guide to Asperger’s Syndrome by Tony Attwood because he actually talks to people with AS and provide good insight into how to work through conversations with people with Aspergers: tips about redirecting and how not to escalate situations.

 I also like watching Temple Grandin’s talks and presentations online.

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13 Comments

Filed under Celebrating Difference, Diagnosis, Family

13 responses to “Growing up with Asperger’s: A Sibling’s Perspective

  1. Thanks for this insight.

  2. Anne-Marie

    I was thrilled to have the chance to ‘meet’ Elizabeth. Her perspective was so grounded and real. Thx for reading! AM

  3. Sonia

    This is really inspiring!
    Thank you Anne-Marie for doing this interview.

    Sonia

  4. Steve

    Thanks very much for this Anne-Marie.

    This highlights an important issue to me which is the need to do our best as parents to ensure that siblings have as strong relationship as they can. While I don’t think any of us want our non-Aspie kids to be burdened with feeling responsible to support their Aspie sibs throughout their lives, the reality is sometimes that happens in families, and sometimes its okay. As Elizabeth points out, their relationship is different than with the parents, and now, probably closer is many ways.

    One of the things that preoccupies my mind in the wee hours of the morning (and I am sure others as well) is the “what if something happens to us…” question, knowing that there is a strong loving supporting relationship between the kids is important to help me sleep… even if it might not be “fair” to the non-Aspie sibling. As long as that is there, I feel confident that we can give them the tools so that along with their love, they can prosper in their own ways.

    • I agree with you, Steve. The sibling relationship is incredibly important in every family, and even more so in families with kids who have challenges. I worry about the burden too and part of what I loved about Elizabeth’s story is that her brother actually helped her see and connect with her own gifts – she has a gift for intuitively knowing what others need and has compassion for their struggles. And when she wasn’t using that gift in her previous job, it just didn’t feel right to her. What more could a parent ask? I hope our Aspie kids will help us and their siblings grow up to be more inclusive and more understanding people. A tall order, I know, but I think they’ve already changed us in such positive ways. Thanks for reading and writing back. I really appreciate it. Anne-Marie

  5. df

    Thanks so much for sharing this, Anne-Marie, it made for great reading and gave me some wonderful food for thought. While we don’t have an AS diagnosis in our family (as you know, our youngest struggles with anxiety and other behavioural issues that may or may not be related to his cardio-pulmonary history), we’re incredibly aware of the demands our circumstances have placed on our oldest son. This ‘big brother’ rises to the challenge again and again, and we try very hard to be mindful of what’s being asked of him, but more and more we are also delighted with the special bond that we witness between these two boys. Our oldest, at 13, is already capable of sharing some important insights with us on his younger brother’s moods and behaviours, and we remind ourselves all the time that we need to heed these observations. We have much to learn from the relationship that these two brothers have already forged and it’s humbling at times. As another commenter noted, that relationship definitely helps me to sleep better at night when the future presents itself as a worry.

    Lots of wonderful reading on your blog – thanks for sharing Anne-Marie.

    • Anne-Marie

      Thanks so much for the great comment. I love what you said about heeding your eldest’s insights about his younger brother : imagine how good that must feel to him…that his observations are seen, listened to, and valued as an important member of the family unit. The more I think about the sibling relationship the more positives I seem to find.
      It’s not all roses, to be sure, but I always come back to Jean Vanier’s words about those with challenges being here to teach/transform us and not the other way around. That’s definitely been my personal experience to date. I really recommend The Boy In the Moon by Ian Brown if you’re looking for a good read about some big issues. Take good care! AM

  6. Love this post!
    I recently interviewed my own NT daughter… Thought you might be interersted??
    Here is the link:
    http://30daysofautism.wordpress.com/2011/04/29/siblings-stress-and-love-a-big-sisters-view-of-autism/

    • Hello Leah! I’m so glad you commented on my blog because I loved your interview with your daughter and just posted it to my Facebook profile. Just tonight our youngest son had a big fight with Ryan and there was some serious hitting and kicking. In the end there was the little NT brother, writing pictures and notes to Ryan to help him feel better again. He has such a big heart and he adores his big brother – in fact it’s a mutual admiration society all around.
      I’m struck by how your daughter describes the joys of H in a simliar way to Elizabeth. Thanks for getting in touch. I look forward to your upcoming posts.

  7. I really enjoyed this interview because Elizabeth has such practical insights to share with parents.

    I don’t feel I have the same openness with my other children as Elizabeth had with her parents regarding her brother. I think I hold back more than I used to earlier on because my son’s disabilities are much more significant than we anticipated so it’s a tender topic as he heads into adulthood without meeting the typical milestones we associate with that (independence, university, career, etc.)

    Elizabeth worked with our team at Holland Bloorview and her firsthand experience as a sibling brought great depth to her work. Thanks for sharing her story with us! xo

    • Thank you for the great comment Louise and for introducing me to Elizabeth. It was such a pleasure to meet her and hear her story. It reminded me how important those connections are…even if we don’t realize it in the moment, the conversations we share with others can be so nourishing and sustaining.

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