So...your 5 year old is becoming more aware of himself and his condition and wants to know what the deal is.
How do you tell him he's autistic or has Asperger's?
How do explain it?
How will your child take it?
How will this knowledge affect his future view of himself and his abilities?
The question was asked in a newsgroup and here is my reply:
What a great question! The following is my perspective and experience only. It's told as a suggestion and a story of what happened to me, but it may not work for everyone. Each situations is different, of course.
I found out about it when I was 13...and I'm not sure my parents were willing to tell me.
While I was growing up, my mother always used to say I was "sick" or "handicapped" when I was small but that I was "cured" and all that. She would never say what it was, so I immediately thought of being crippled (since handicapped signs always have the little guy in the wheelchair logo). I had read in my baby book that I had club foot at one point and had to wear special shoes for awhile, so I thought that was what she was talking about. Autism was not mentioned anywhere.
Even at school, my files said "may have seizures" under the "any medical conditions we need to know about" section, but that was it. My parents often met with teachers for hours on end but I always thought they were discussing how badly I was being bullied. Clearly, they did not want me knowing what it was.
Mum held a Tupperware party at the house when I was 13 and a woman who used to babysit me was there telling all these stories about the weird things I used to do. I asked her what the heck she was talking about and she said "Well, you're autistic..."
I looked at Mum and said "What is this woman going on about? Autistic? What's that?"
Mum muttered something about me once being autistic but I was one out of very few people who were cured, so not to worry about it. (This is before I knew that autism is a lifelong thing)
It was around that time that I began getting very heavily into psychology and had amassed quite the collection of textbooks that I used to buy at the used bookstore I worked at. This was back in the 80's when still not much was known here about it.
I looked up autism and decided that I couldn't possibly be autistic. The books described the "Kanner classic" form of autism: not talking, playing by oneself in a corner (there was pictures of autistic kids in a room ignoring each other), being severely disabled, etc. Well, I was talking, walking, going to school and bowling on weekends with friends. How could I possibly be autistic?? Maybe I was as a kid, but at that point, I was nothing like those kids, so maybe Mum was right?
You see, after the age of about 4, I grew up living a "normal" life. I went to normal school, got no special treatment at home (except that my parents gave me my own space because they were always at work), I made few friends, but the ones I did have liked me for who I was...quirks and all! The expectations placed on me seemed to be the same that any other kid gets placed on them...I was to well at school, look into a career, learn how to get along in life and even date.
Being an artist and musician, I had always thought that I was just "eccentric" and "moody" like other artists and such. Sure, I obsessed over some topics and it made me feel good to do so. Was that so wrong? I saw many NT's and such obsessing over certain things in their lives, so I really saw myself as no different, and my parents never made me feel different. I never would have made the connection between autism and who I was at the time had I not been told.
Then I got to thinking...what would it have been like had my parents told me?
What if I had been raised with the autism label over my head?
What if I was treated like some poor disabled kid with no future?
What if my parents kept making excuses for me by saying "She's autistic...there's nothing we can do about it" when I misbehaved or acted out?
Where would I be today?
Would I have just written myself off as not being able to succeed, so why try?
Would I be living off the system?
Would I have bothered with working, meeting people, volunteering, etc.?
Would I need help from an aide for the rest of my life?
Would I be happy?
Turns out that when I officially found out at the age of 13, I immediately went out and got a job (It was close to Summer vacation at school). I had read the prognosis in those outdated psych textbooks and decided for myself that I was going to work, I was not going to be dependent on anyone and I was not going to end up like those kids.
On one hand, I would have understood myself better...why the sounds were loud, why the smells were strong (that no one else could smell), why I couldn't feel external pain, why my tolerance to foods kept changing and why I got so stressed out after a day at school or when I was around large groups of people. I would have recognized my limits.
At 13, I was old enough and had lived enough to know what I was actually capable of. I was fiercely independent and very keen in maintaining that independence throughout my life. I had come this far, why stop now? "Go hard or go home", right?
That was my attitude all the way through high school and college and I found myself quite ill on a frequent basis...every few years or so. It never occurred to me that I may have been pushing myself too hard to fit in and be normal. I didn't even realize how good of an act I was putting on. (All that programming done when I was a toddler must have done that) I thought I was normal...but couldn't figure out why I was melting down so much as I got older.
My illness in 1999 put the brakes on a lot of things and a lot of things came out that I had not done in a very long time: flapping, retreating, being afraid to leave the house, not being able to speak for long periods of time (tongue tied), not wanting to speak or do anything for long periods of time, being very hypersensitive to every sensory thing...I was a mess.
What was happening to me??
My mother and I talked a few times on the phone and she said "Oh God...you've become autistic again...they warned me that this might happen when you moved out on your own!"
Autistic again??
While I was recovering from my illness that I met Tom Smith (yeah...that guy) in a chat room. I mentioned that I had been diagnosed with autism at the age of 2, but I was ok now (well...kind of). He invited me to join his Autism List and I did. It was there that I began making the connection. There were other autistic adults on the list, as well as parents and such.
They all seemed to be communicating quite well online, so I asked the question: Can autism be cured?
That's when I learned it cannot be cured and I was asked how I was treated for it when I was first diagnosed. I had found out from my parents that I had been at MH (an institution for autistic children) in my hometown and that they used Lovaas method treatment there. My parents have told me that they have blocked out a lot of those years and I think they were living on the hope that I was cured and that I'd never find out. They didn't want to deal with it anymore.
I was told about how Lovaas style therapy (ABA) works and it brought back a lot of memories that I had blocked out. I remembered how, at the age of 19, I had responded to an ad in the paper from MH who was looking for support staff. I remember nearly having a panic attack when I saw the name of the place in the ad. Why was I freaking out? Looking at what was told to me on the list, it all flooded back and it was not a good memory either. I remember my mother threatening to take me back there a few times when I was a kid, and I remembered screaming and crying that I'd be good and not to take me there again.
On that list, I saw a variety of people, all with their own talents and challenges and I learned that autism is a spectrum and that I was likely on the higher functioning end of it. Some folks mentioned stomach problems similar to mine; others mentioned anxiety, which was something I have always struggled with. Looking at how folks were bullied in school, how they had a hard time relating to other kids, had some sensory issues, etc., I saw a lot of myself there and realized that I was in this for the long haul.
I knew why I behaved the way I did when I was really ill. I couldn't act anymore. All of those coping behaviours had been suppressed for so long that, at my weakest point in life, when I couldn't put on the act anymore, they naturally came through. It was then that I realized that I had been putting up such a strong front that I didn't know how much effort I needed to put into it on a daily basis. When the walls came down, in the metaphorical sense, I was left with just myself in all my glory, behaviours and all.
My 'mask' had fallen off and I wasn't sure what to do. I was left looking at who I really was, not who I was pretending to be. Why hadn't my parents told me?
On the other hand, knowing me, I likely would have given up on life too had I grown up with this knowledge. I may have written myself off. When I thought I was just a weird teenager, I was happy to keep working towards what I wanted to be. Had I always known I was "disabled", I might not have tried as hard because someone else would do it for me. I might have gotten really depressed and thought I was useless and incapable.
Sometimes, when things are bad, I wish my parents would have just followed the recommendations of those doctors in 1978 to just put me away in an institution. Then, I look at those who have been there and I thank God that I did not have to go down that road in life.
Now, I've made peace with who I am and I know my limits. Yes, I put on the act every day when I leave the house to go to work, but I let it slip off at nights and I'll happily space out or pursue a perseveration to relax myself. I take more control over my situations, including saying "no" when I'm too stressed out. I've taken charge of my life and have found methods of dealing with those years when I am in a constant state of anxiety, hypersensitivity, etc.
I know to leave my office, go outside with my cell phone and call someone who can help take my mind off things. It doesn't make it any better, or make it go away, but at least I am learning how to care for myself when I need it most...and I know how to ask for help. I know where to seek it.
And, yes, I push myself because I know what I can do. I know my potential and i know my limits. I've done it this long, I'm not quitting or giving up on myself now.
So...what about other kids and parents? How to broach the subject?
I'm not sure what I would do since I'm not having children. I would probably tell my child as soon as he or she is old enough so that he/ she would understand why he/she is different from the other kids.
I would explain what autism is and perhaps discuss with my child what his/her limits are. What is he/she sensitive to? Does he or she feel sick a lot like I do, or is there something else that they deal with that I don't? How does autism manifest itself for him/her? What does he/she like? What bothers him/her?
I would explain that these things are likely a part of autism and to accept that those limitations are there. Nothing to be ashamed of. I would use plain, logical language to explain things and help my child empower him/herself over time.
I would have my child know that they can come to me when things are getting bad and that he/she doesn't need to act normal around me, make eye contact when he/she doesn't want to and that I will give him/her the space needed to live and pursue his/her life. My child would know that I would stand up for him/her, fight for him/her, advocate for him/ her, but that I would not make excuses for him/her and not allow him/ her to write him/herself off because others do it.
I would also explain that all non-autistic people have their limitations too. Blind people can't drive, deaf people can't listen to music the same way we do. Diabetic people have to watch what they eat and follow a regimen of medications and such. Some NT's have very short attention spansm while others have a hard time dealing with stress...or have problems with bad backs, limbs, etc.
Nobody is perfect and no one expects us all to be perfect anyway...it's unfeasible!
I would see if we could work out some sort of way to deal with when the stress is too high. Teach them to know when they are getting near the limit...like a thermometer perhaps if the child is good with association. See stress level like the red stuff in the thermometer...when it goes up to a certain point, stress levels are going up and to tell me so I can be supportive or work on a relaxation technique, etc.
I would find ways to teach my child how to handle stress and help him/her make up fun ways to deal with stress or communicate it...even if it's just a hand signal or a way of tugging my shirt or holding my hand. Even a certain phrase or facial expression that only we know. I would want my child to know that I understand and that we can connect in whatever way is best for the child. (Dad and I used to make faces at each other as a bonding thing)
On the other hand, I would also tell my child not to give up on him/ her self, but to do what many take a long time to learn: capitalize on your strengths and learn to cope or ask for help with the weaknesses. What is he/she strong at? How can she/he use those strengths? How can he/she use those strengths to do what he/she wants in life? What sort of plan can we make together to help make it happen?
I would say the same thing my father told me: "You can do anything you want if you are willing and able to put in the effort and work required to put into it".
Perhaps I'm just a big dreamer, but that is how I would have liked it done for me if my parents had told when I was very young. I lucked out because I had already discovered my potential and was well on my way to establishing myself when I found out.
Just my thoughts typed up late last night!
