Parental Social Isolation in Autism

I'm going to go out on a limb here and post about something my wife and I talk about often but find difficult to share without offending others.  In any life circumstance it is easy to feel like people around you don't "get" it.  I suspect this is true of many situations... I can comfort someone dealing with cancer, but if I've never had cancer, or the specific type of cancer, or the specific unique circumstances of a person with a specific type of cancer, I may not "get" it.

Disclaimer:  Some readers may find this post a big negative whine-fest... and it pretty much is.  Sorry, you've been warned.

It is very easy as a parent to become socially isolated when you have a child on the spectrum.  Mostly it has to do with people not really understanding your daily life.  They may trivialize something or try to compare their own experiences with typically developing children in an effort to relate.  In short, they don't "get" it, and trying to explain "it" becomes very difficult.  So here is an effort to explain and see if it works.  It may not.  Another parent with a different experience may think I don't get it either.  But I'll try anyway.

Explanation #1:  Social outings are harder for us to manage - make the extra effort to make it easier for us and we will love you forever.

Everyone is busy.  To be social one must be intentional.  This is difficult with young children and even harder with a child on the spectrum.  Here's why:

• We're tired.  Alanna doesn't sleep normally; she is often up for hours at a time.  It is not an easy problem to solve... think I can give her Benadryl?  Tried that, it made her hyper.  This is a long story - if you have kids, think back to when you had a newborn.  Now pretend that the period of not sleeping through the night lasts 8 years or longer and not 8 months.  There you go, now you get it.
• Alanna doesn't really play with toys for long without prompting.  That means we can't just go into a room with toys and sit and chat with other parents.  We have to be intentional about planning activities she will engage in or be prepared to engage her ourselves.  My typically developing two year old can play with a single toy for 20 minutes.  Alanna will lose interest in less than a minute unless the toy gives her sensory reinforcement.  Sorry, can't just sit and talk to you!
• Alanna likes other children but to engage the child in question has to be super persistent, and even then, it's not always a sure thing.  Plus she can't talk and is only learning how to use her iPad.  Three year olds can't understand a sentence strip with PECS on it.  Sorry, I can't leave her with kids her own age and let them play!

Explanation #2:  We really are doing the best to make her as independent as possible.

• Since so little is known about what causes autism, everyone has an opinion.  There are many "treatments" but very little evidence.  Do not assume what you saw on a talk show last night has any basis in reality unless you see the research in peer-reviewed respectable journals.
• There is no known treatment that is guarantee to help every child.  It does not exist.  There is no silver bullet to cure autism.  In other words, trying shiny-new-treatment X will probably not cure Alanna.  It may help, but you are probably not an expert by reading an article, so don't pretend you are.  You just make us feel bad because the insinuation is that we are not doing enough.
• Focus on the positive - recognize what Alanna can do and build on that.  We are too busy focusing on what she can't do and don't need any reminders.

Explanation #3:  Even the best intentioned family and friends can become overwhelmed quickly.

• Even though Alanna is just turning four, she is becoming too much for most friends and family to care for because she needs a lot of attention.  A weekend away means paying a respite worker, and that is likely to become more common as Alanna gets older.
• Very few people we know actually want to spend time with Alanna just to be with her.  Some do for our sake, some do because we pay them to.  It is hard to get excited spending time with a girl who doesn't talk to you and who may not reinforce you by interacting in the way you'd like.  I get that, it's hard for us and we are her parents.  It's not that people don't want to spend time with her, they just don't know what to do with her when they spend time with her.  That is just reality.
• We try to be sympathetic when others express frustration with their kids but honestly, it's tough.  We are sorry your child has wet their pants all day long, but in two weeks your child was toilet trained... at two years old.  Alanna is almost four years old and we have taken her every 30 minutes to toilet for over two months.  She is almost there but has accidents almost daily.  Almost everything is harder for her to learn than a typical child.

Explanation #4:  The future is scary.

• We are often asked about how Alanna will "turn out".  We don't know.  We don't know if she will be able to talk beyond a few words or not.  We don't know how independently she will be able to live.
• Based on her trajectory and based on research about outcomes, it's likely Alanna will be at least financially dependent on us for most of her life.
• Being unrealistic about her future is challenging for us - it reminds us how unlikely that future is.  Yes, she may get married and have children but probably not, so it is better you don't bring up that topic.
• We are scared of what will happen to Alanna when we are gone and even more scared of any burden placed on her younger brother.  Yet, there is no way to escape this reality, so we have to plan for it.  It is prudent, not silly.

Explanation #5:  Autism and Asperger's Syndrome are the not the same thing and autism is not a mild disorder... and other myths I've heard.

• Children do not grow out of autism.  They become adults with autism with the ability to cope with the world to varying degrees.  Temple Grandin is an example of someone who is very successful at coping.
• Most people with autism are not savants and do not have some amazing skill they are good at.
• Autism is not just a social disorder.  People with autism are not just socially awkward or different.  You are describing mild Asperger's Syndrome.
• Autism does not imply intellectual disability.  There is a high correlation but it is very difficult to measure intelligence in individuals with autism.
• People with autism have disordered senses and this is often an explanation of behaviour.  They do not necessarily experience the world the same as you or I.