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Thursday, March 22, 2007

Aspergers, Isolation and Support.

Is Aspergers isolating for families? I hear daily from people with children or relatives who have Aspergers. It seems that for many, the condition isolates the majority of family members, even extended ones. This has piqued my curiosity and I smell some research coming on.

One thing I have really noticed is the frequently desperate voice of people caring for Aspergers kids. Desperate for information and support, the carers seek comfort in chatting with others who understand the dynamics of a home where Aspergers social skills take dominance.

There are plenty of academic, text and parenting books around about Aspergers but I have not found a single book containing the multiple voices of non-aspergers family members affected by the meltdowns and impaired social skills of the person with Aspergers: a support group book if you like.

How do you cope with friends who label your Aspergers family member as naughty, rude or lazy? What is it like in your family when the meltdowns last for hours? How do you recover from the obsessions, anxiety or isolation when your Aspergers loved one refuses to leave the house? These are questions I receive from readers who are just beginning the Aspergers paved road leading toward having a different life.

At times, I have used creative and formal writing as my sanity sanctuary (Parenting a child with Asperger's Syndrome and Living with Autism). At other times I ring my partner and vent on him (he doesn’t want to come home then!!). I research, read and seek out different strategies of coping. I reframe my child’s behaviour and accept that this is our family life: different and focused on preparing our son for a life where he will always be viewed as a little strange. The best thing has been the contacts with others throughout the world who are going through similar situations as us. Hearing of their life, their difficulties, their ways of coping and adjusting has given me strength. I owe an enormous amount of gratitude to Elisheva at Ragamuffin Studies: she came into my blogosphere life on a day where I wondered if I’d make it through without going stark raving mad. Talking with another adult who instantly recognised the challenges of Aspergers parenting and home schooling has cemented a friendship that I hope will eventuate in meeting face to face.

I value and appreciate those people that contact and tell me of their journeys. We have rich material that can help each other and I would love to see someone collect our data and turn it into a support handbook for other parents of children with Aspergers.

Is Asperegrs isolating for your family? Would reading a book about the experiences of others be helpful?


Anonymous said...

I found your blog looking for Aspergers and homeschooling. I'm not certain my kids are on the spectrum, but I'm not sure they're not either. I'm pretty sure my ex husband is. He self identified until it looked as though there might be some help for us by looking at it's effect on adult relationships. Your question about isolation drew me out. I wonder how many who feel the isolation are dealing with multigenerational AS? Dealing with the traits in my adult partner was harder than dealing with them in my kids.

Alas, it seems that the issues surrounding AS in adult relationships tends to get worse when kids come along into the relationship and that can be very isolating. Not only are you dealing with how others react to your kids and partner, but your partner is now having a hard time dealing with the changes and often isolating you within the family.

Megan Bayliss said...

Very interesting points. It must be even more isolating when the partner has Aspergers, let alone multigenerational AS. The multigenerational aspect would be a double whammy.
Thanks for your comment. Drop back anytime. Please don't stay isolated. Know that at least some others have an understanding of what it must be like for you.
Take care and stay safe.

K said...

Thanks! I'm actually pretty good about not being isolated, but I am also one to think about these things. I know that a lot of adult diagnosis comes about after a child is diagnosed and that the effects on adult relationships is a relatively unexplored area. There are some good books out and reading a few of them went a long way.

I suspect that even parents who don't have a partner on the spectrum might do well to read some of those books to see where their children may face issues as adults. Knowing where some of the pitfalls are likely to lie may head off a great deal of the stress and potential negatives. It might also help parents to support future children-in-laws and grandchildren, AS or not. Having a parent with some of the problems isn't easy on their kids either.

I think homeschooling is one of the best options out there. I have a sneaky suspicion that if my kids had gone to school I'd be a lot more sure of where they were on the spectrum. I can see where certain problems would have been exacerbated That's no slight on anyone who sent their kids to school. I consider myself lucky that I had an interest in homeschooling long before my kiddos came along - I certainly didn't make the choice with this in mind. It just seems that homeschooling is a good fit.

Thanks for a great blog. Your wedding plan sounds lovely! Best wishes for your big day!

Julee said...

Great post to make us think. I'm not positive yet if I have a child on the spectrum, but I do have one that I'm watching... It's nice to that there are experienced people who have gone before and that should my life take that turn, support is there.

Kerri said...

I hope that the book becomes a reality. My nephew was originally diagnosed as having Asperger's, but the diagnosis was switched to High Functioning Autism (I think that's correct). I know that community and support is what my SIL has been trying to encourage and pioneer in her area.

Here via CoFL

Lisa said...

Great post. I am sure a book would be so helpful. People always need information, support, and an outlet when dealing with something like aspergers.

Here via the carnival of family life.

kailani said...

That's what is so great about the blogosphere. It's a great way to get support from people who are going through similar situations. Where else could you find such an accessible support group?

Here from the Carnival of Family Life

Anonymous said...

"I am a rock, I am an island-"
These words come to mind in reference to my 9 year old Boy that also has Asperger's. A major meltdown before school this morning caused me to search the Internet for a way to deal with and encourage a reduction in
these meltdowns. Does your son detest school? Mine abhors school and homework. He also would be happy if aliens would come down and abduct his 2-years younger sister permanently. These problems permeate daily life and extinguish hopes of normalcy. I have no one to talk to that really understands what it is like to face this day after day. One mixed blessing is that at school he does not have meltdowns. He is the daydreamer that would spend the day drifting away aimlessly with his thoughts. I suppose I should be thankful that the school does not get the meltdowns, but instead this quiet, self-absorbed Boy; yet, selfishly I am angry because I am jealous! Why must I be the one to face it head on! I commend you for the idea of a book that details real experiences of mothers dealing with Asperger's. As a mom and librarian I believe it to be a fantastic idea. What would be even better, though, would be an online support group. A place that is always open and available so we don't always have to be this rocky island.

Megan Bayliss said...

Thanks so much to all who have left comments. As I read some of them, the hairs on my arm stood up. How I remember those days of meltdowns before school and the constant living in a war zone. Post Traumatic Stress – we all had it!!!!
Our son hated school to the point that we feared he would hit someone at school. He had no friends, was way behind in academic achievement and we got constant calls from school asking us to come and pick him up because it wasn’t safe for him or others. School was excellent in supporting us and coping with him but it came to a point where all they were doing was managing his behaviour rather than imparting education to him. The other kids in the class used to ask why he yelled all the time and they couldn’t understand why Boy would sometimes turn on them for no apparent reason.

We were both nervous wrecks – my partner didn’t even want to come home some days. A specialist had suggested that we home school and we both thought it the most ridiculous thing we had ever heard. After six months of daily meltdowns, we bit the bullet and began home schooling. It was the best thing we ever did. Boy is now calm, is learning and is even developing some social skills. Whereas others worried about his socialization, we never did because he cannot make friends and understand the importance of being a friend in the way we do.

My earning capacity has been cut in half but my partner is able to work away more and earn increased money because he’s not always worried about me and what’s happening. I also pulled the reins right in and lessened the activity in our home: no visitors, no going out to catch up with our friends, just us and our efforts to re establish some quality life. My other kids hated Boy at times because of the changes they had to make and one of the kids refuses to have anything to do with him. She lives with her Dad and there has been no contact for about 10 months now. This was very hard for me but I have grown to accept that this is just the way it is going to be.

I used to find solace in a site called The Wrong Planet. It’s an online support for people with Aspergers but there are also many parents of people with Aspergers on the site. I liked to check that what I was doing with my son was reductionist rather than increasing of meltdown potential. Nowadays I still fear the meltdowns but once every six or eight weeks is far better than every day. One thing that really worked for me was understanding that the meltdowns are worse for the person with Aspergers than they are for us. Once I got this through my head, I was able to stay very calm during the meltdowns and not give in to my desire to scream back and lash out in sheer frustration.

We are isolated because of his Aspergers. His behaviour takes up a lot of my head space – worry, fear and stinking’ thinkin’ about me being a bad parent. However, we are now growing a child who apologizes after his meltdowns and becomes distressed that his behaviour is setting him apart. He loves the home schooling and even though the academic improvements are small, he is improving and learning in a supportive environment that is conscious of his needs and that is flexible to his changing perceptions and obsessions.

I think there is real value in a book that captures the essence of life parenting and surviving an Aspergers child. Finding a publisher may be difficult but comments on blogs like the ones left here appear to give strength and empowerment to others who are walking the very rocky road of meltdowns.

Thank you everyone. The more we support eachother, the less isolation can creep upon us.

This blog is no longer kept. I am instead blogging only to Imaginif Child Protection became Serious Business