I was reading this article the other day where a therapist was detailing her attempts to reconcile a couple on the verge of splitting up due to the horror/abyss/hell/tsunami of autism. Its pretty depressing reading.
It’s a common refrain – how autism has affected someone’s life. Usually there’s a long list of how finances, relationships and life generally have all suffered since the diagnosis entered their lives.
To me, its all about how you approach the issues. Are you someone who sees the glass as half empty or half full? These were definitely half empty people.
I’d like to describe how autism has affected my life.
My wife and I will have been married 10 years next year. Something I consider quite an accomplishment in this day and age. We’ve had a lot of difficult times and rowed often. When Meg was diagnosed we were stunned, angry, hurting. However as we came to accept, we started talking to each other more. We started to back each other up more. We started supporting each other better. Autism didn’t only bring us a beautiful little girl, it brought us each other in a new way.
Naomi and I used to be members of a parent-oriented autism forum. There were a few good people there and a few drama queens. One couple used to complain that they now only managed to get away three or four times a year with each other for ‘little weekend breaks to Prague’. Well, boo-hoo. Poor them. I heard later that the husband of this couple had a nervous breakdown due to the stress.
Right. I hear less than five weekend breaks to Prague per year can do that to a man.
Please note: I’m not belittling anyone who genuinely has had a nervous breakdown. This guy whoever, was (is?) a primadonna without equal.
The last holiday Naomi and I had was our honeymoon. And I couldn’t possibly care less. Naomi has had a couple of breaks with the kids and her parents whilst I stayed here and worked as we couldn’t afford not to be earning. Whenever I hear biomed parents crying over the cost of all that TD-DMPS I roll my eyes and think of that old adage about a fool and their money.
Naomi and I watch DVD’s together, we talk together. We spend hours chatting after the kids are asleep. When we feel like celebrating, Megan and I walk into town, I buy some nice grub, a bottle of wine or three and after the kids are asleep (assuming they go to sleep) we put on nice clothes and have our nice meal with the TV off and the lights down. If Meg’s having a bad night, we take it in turns, a few hours each, to sit with her.
If Anthony’s over for the weekend then we sometimes play Monopoly or cards or we play along with Who Wants to be a Millionaire. I watch the American wrestling with Anthony on TV (possibly the funniest, campest thing on TV).
Because of autism, we found our family.
We have less money than we used to. I can’t pursue the heady heights of my career. Most web developers of my age and experience are head of design studios or successful freelancers. I couldn’t possibly care less. We have enough money to keep a roof over our heads, food on the table, clothes on our backs, the odd DVD collection (Prison Break Season One currently) in the player and lots of time. Because I’m not scaling the corporate ladder, I don’t have to stay late at work. I can get home before the kids go to bed. I can help my wife tidy up. Money can’t buy me the time I get to sit besides the bath as my two girls splash around in it before bedtime. Whilst my friends organise their working lives via their mobile phones, my wife’s sending me stills and video’s of the funny/cute things my kids are up to on mine.
Autism has made me more patient, calmer, confident, determined and considerate. I think I’m a better person and a better husband and father since Megan was diagnosed. So, to echo John Cleese’s classic ‘All right, but apart from the sanitation, the medicine, education, wine, public order, irrigation, roads, a fresh water system, and public health, what have the Romans ever done for us?’ I’d ask ‘Alright, but apart from a great family life, strong bonds with my wife, being a better husband, having the time to be a good dad and generally enjoying life, what has autism ever done for us?’
Left Brain Right Brain 
Most of the women would like to have you as a husband. Megan was not so fortunate to have this disease, but as far as I can see God compensates things and mean giving your wife a man of wisdom. Congratulations for your attitude!
It’s so easy to blame something other than our choices for the results of our choices. Simon Baron-Cohen asked me if being on the autism spectrum helped me to get my degree in psych. I said sure, but as much as being on the spectrum helps me to think in particular ways, it also makes graduating very difficult because the system is more set-up to keep people with social skills out of college than it is set-up to help them to graduate.
Still although all autisics can point to stuff about autism that is very frustrating and even painful (being bullied comes to mind), alot of the negative stuff is external and inflicted by others and even the stuff that is inherent to autism and can be negative is still something we’d prefer to deal with than be someone else (as we are supposed to wish that we could be normal if we had the chance).
As a parent, I worry for my ASD child more than I worry for my typical child (both adults) because I know the ASD child is more vulnerable to abuse by “normal” people. Overall, my ASD child seems to really enjoy being who xe is and never talks about wishing xe was someone else. I have been through nightmare days dealing with doctors over this child’s physical problems, and those I think I could easily have done without, but I love my child’s personality and way of thinking, even though we don’t always agree and xe says I’m stubborn… hmph.
I think I’d be much less cranky, though, with a few weekends in Prague per year (yeah right) and a personal masseuse… and a luxury vacation home on Lake Pend Oreille.
What has autism done for us?——what has Charlie done for us?—-more than I can ever say. Life is not always easy; life is always good.
Life without Charlie and autism is unimaginable.
I’m so glad you wrote this, Kev. My husband & I will be married 18 years this December & went through a lot (including a “bout” with infertility & the main part of my recovery as an an incest Survivor) before B was even born- which just made us stronger & better able to cope with & appreciate our lives together now. We try to spend some time together each evening, somtimes rehashing the day, sometimes reading aloud to one another, sometimes brainstorming solutions to the most recent B crisis, & sometimes just holding hands. I am so blessed to have the husband & son that I have. I wouldn’t change my life for the world!
My husband and I “date” during nightly DVD’s, too! Autism has made us better parents, better partners, better people. Thanks for another lovely essay, Kev.
Cheers! Well said, Kev.
You’ve touched on a core philsophy of mine. To paraphrase Victor Frankl, while we may not be free to choose our situation, we are always free to choose our attitude.
Once again Kev you hit the nail on the head. I’ve found that my Asperger’s syndrome causes problems for me, mainly because I didn’t know what I had so I spent nearly a quarter century thinking I was crazy stupid or both. However I wouldn’t give up the way I think and see the world for anything.
“Simon Baron-Cohen asked me if being on the autism spectrum helped me to get my degree in psych.” I forgot to say that he asked me on the AWARES conference bulletin board, not in person.
People may blame the autism, but it is that other triad of impairments – health, education and social services – that jacks up the pressure. A constant refrain is, “Why do we always have to fight for everything?”
The pressure can destroy relationships if folk do not take positive steps as you have done, to create quality time for yourselves as a couple. I think that you and Naomi are both possessed of inner strengths and resources that would have emerged without the challenge of Megan’s autism. You are two special people.
Kevin,
As always, beautifully said! You guys are lucky to have each other and to have figured all this out.
I love any blog post that ties together autism and Monty Python, too! You made me smile before my second cup of coffee.
Thanks all – I don’t want to paint our family as some glorious idyllic, believe me, sometimes we have our moments ;o)
We’re not extraordinary in any way, I think a lot of people – the silent majority hopefully – come to feel this way. The times are a-changing I think. It’s OK to be fretful, its OK to be stressed, its OK to worry but its also OK to enjoy and take heart and make a choice to ignore the things that really don’t matter.
If I had five hundred quid, I could maybe take Meg to Buttar for an hour and get some smelly skin cream and a bucket load of minerals to stick in my extra fridge.
Or I could get her some books, some DVD’s, take her out, throw some bread for the ducks in the duck pond. I know which will benefit her more in the long run.
I choose to be a Dad rather than a nurse, that’s all :o)
Kev, this is a lovely post. You certainly have your priorities right. You’ll have the rest of your life to enjoy “little weekend breaks.” And then you’ll be feeling nostalgic about how fast children grow up, and you’ll look back fondly on the good times you had taking Megan to the duck pond.
Kevin this is a great reflection. I am so glad that the important things are important to both of you.