Language Translation

Monday, November 7, 2011

If You Don't Believe In Him, Who Will?

I received a message from one of my favorite cousins the other day.  She and I were penpals growing up and, although our interaction is almost entirely on FaceBook, she remains very dear to my heart.  Anyhow.  She told me about an experience the other day.

A child has Autism.  This child was playing with her child.  There was a verbal exchange.  Her child left the room.  The child on the spectrum just stood in place - not knowing what to do or how to let go of what she was feeling.  My dear cousin wrote,

"I told her that she was okay (no blows had been exchanged.. just territorial discussions!) and she bursts out saying... 'You don't know. I'm AUTISTIC! And I feel like everyone bullies me. My parents, my teachers, EVERYONE!My initial reaction in my head was, hey, autism is not your whole existence, just a part of who you are, and your behavior should still be within social norms. So I repeated that she was okay and started to walk away. Then I thought of you and how you talked about not reading situations correctly and feeding off of emotions.

So I walked back and put my arm around her and proceeded to explain that no one was bullying her, that everyone gets stress in their lives and we all have to learn how to live with it. We had an interesting discussion. One of my favorite things she said to me was, 'You have stress too?'  I replied 'yes'.  She then said, 'Because you are a mom?' and I replied 'YES!'  She calmed down and went on to go play somewhere else.

So I don't know if I did all the right things. But I tried to convey calm peaceful feelings through it all."

I told my cousin that I could just kiss her for this!  It was so wonderful to read.  I wanted to share this for a couple of reasons.  First, I wish every child on the spectrum had someone like my cousin in their lives.  Too often we use the diagnosis as a crutch to excuse behavior.  It is meant, from my perspective, as a great guide for a starting place.  Yes, I may have to work harder than most people to be able to adjust to social norms.  But is that any harder than the person who is born a psychopath and we expect him to "adjust to social norms" or we lock him up?  I know that is going to offend some of you parents and loving ones, but please hear it from my perspective.  

Telling me that I am excused for my bad behavior because of my disability is just enabling me.  I'm not saying you should be hard on your loved one.  I'm saying you should expect more of them.  Does that make sense?  I'm not telling you to beat the child if they step out of line.  But I know, from my own childhood, that I am capable of adjusting to social norms.  I do not always understand the "why".  I do not always get the rules right.  A lot of the rules make no sense to me, at all.  But they are still the laws of our society.  Verbal abuse is verbal abuse, even when the person giving it is on the spectrum.  It still leaves a mark.  No matter what.  I shouldn't be allowed to bully parents, teachers, peers, etc. just because I am on the spectrum.  That, in my mind, is wrong.  So.  There you have it.  I know.  It sounds harsh and cold, but if I could convey my heart on this....

I see all around me, children who are on the spectrum.  They have been given a free pass for their behavior.  I feel like I am watching the parent whose child was born without an arm.  Instead of expecting that child, from birth, to learn how to do things without an arm, they coddle and protect and try to make life "easier" for this child.  What they don't understand is that they are just crippling their child further.  

I have some very dear friends whose daughter was born with most of her arm missing, she only has a couple of inches below her elbow joint, and no hand.  Her parents, being wise, knew that one day their daughter would have to learn to make it in life without their help.  So their hearts ached for her as they watched her learn to function with only one full arm and hand.  But I have spoken to this girl many times and asked her what it was like.  Her response is always the same (she is now 13).  She said that she doesn't know any different.  And that she is glad her parents let her figure things out as a child because she can do pretty much anything a person with two hands can do and it isn't any harder for her.  She adapted to her body.

I did the same, because my parents expected it of me.  Yes, it required ingenuity on my part.  Of course it was sometimes frustrating and aggravating.  Definitely there were days that I just didn't understand and had a meltdown.  But I kept going because mom and dad expected me to keep going.  Your children are giving you what you expect of them.  Whether your child is verbal or non-verbal, there are basic levels of conduct that can and ought to be expected of them.  

I'm not saying that you should expect your non-verbal child to politely say "hello" to everyone...that would just be plain asinine.  What I am saying is that if your child is having temper tantrums, you can expect them to change that behavior.  If he is throwing a fit, give him a consequence and when he has calmed down, teach him the proper way to express his frustration or anger.  Whether your child is on the spectrum or NT, this kind of teaching is the same.  

He can be taught to have a meltdown in a way that is not abusive to anyone.  He can be taught to express his frustration in ways that do not harm those around him.  If you expect him to listen and learn, then he will.  Yes, it may be frustrating to you that you have to repeat yourself over and over.  But that is better than learning that your son is being charged with assault when he is 20 and interacting with people in the real world.  Isn't it?

If you do not teach him appropriate behavior, who will?  If he goes to therapy and then comes home and the things he learns in therapy or in school are not reinforced - it is all for naught.  I'm sorry.  I feel like I'm preaching here, but this is just super, super important!  I cannot tell you the number of homes I have been in and taught this one principle and seen "miraculous" results.  If you hold your child accountable for the things that you would hold your NT child accountable for, you will find much different behavior patterns developing.  Oh.  Let me clarify one thing.  Hold him accountable at his neurological age, not his physical age.  

So, if he is neurologically 2 years old (even though he may be 16), expect him to act like a developing two year old.  Meaning, when a 2 year old has a temper tantrum, you correct them.  You teach them the words they are looking for to express themselves.  You help them with the skill they are grappling with that has caused the frustrated outburst.  You don't just let them scream and scream and terrorize the household.  

Expect your child to be capable of anything that someone their neurological age is capable of.  If you will do that one thing, you will see so much improvement.  I have watched it happen over and over again.  The families I've worked with who treat their child like a child who is NT at that neurological age have all had phenomenal results.  You have to think of him as that age, no matter what his body says his age is.  He is developing, at a much slower rate, but he is developing - so treat him like he's developing!!!  Meet him where he is not where he should be and he will blossom as you've never seen before.  But that also means disciplining him where he is and in the same way that is appropriate for a child his neurological age.  

Okay.  I'll be done now.  It's just really, really, super important for your child's progression that you understand this concept.  It is the difference that helped me move from moderate-low functioning to very, very high functioning.  If you don't believe in him, who will?  Your expectations of him need to be realistic, but also need to encourage growth, rather than consigning him to be where he is for the rest of his life.  There is nothing quite so disheartening for one trying to progress than the feeling that no one thinks he can progress.  Believe in him, and then treat him like you believe in him...even if that means disciplining behavior that is inappropriate for his neurological age.  You can do it.  And one day, he will thank you.  


  1. so true. thank-you for sharing this. I work hard to work with my son in this way and get so many complaints and insults from those around me. It's always either I'm being too hard on him and should just let him be because he has a valid excuse or I'm not being hard enough because they've seen him behave before so why is he struggling at the moment kind of comments.

    I also get the comments about him being too good to have problems and I simply reply by saying it's because I work hard at teaching him respect and self control and self calming. Even though I definitely keep his dissabilities and his autism in mind, I don't let it be used as an excuse to not do my job as a parent by raising him and teaching him all that I can.

  2. As always - your insight is so helpful to me. Thank you!

  3. I like how you said "Meet him where he's at" Sometimes people don't understand that part (the body is big but he's only half the size emotionally). Following through is so important in everything we do in life. Actions speak so much louder than words. Definitely, talking about it and showing/modeling and even role playing ways to better handle the situation helps. You have to understand when they are looking for attention at bad times too! Not to feed into that. Taking data if the behavior is not getting better is important...and then sometimes there is that "element" of surprise, where no one can judge or see it coming! LOL They certainly keep you on your toes. As a mom who has 3 children and only one on the Spectrum, the parenting of an Autistic child I must say, is different but if you're consistent and you follow through it helps. You also have to factor in that the comprehension and social skills are really off track in some cases (gets lost in translation) so your discussion may end up being 25 minutes instead of 5! LOL

  4. Being the parent of a child with autism means always straddling the fine line of accommodation and enabling. It's a very tough road and because it is so long and intense, some days are better than others. I hope my "better" days outnumber the others! Thanks for your blog - I find it incredibly insightful and invaluable.

  5. Krisztina from IrelandDecember 14, 2011 at 6:53 PM

    Thank you so much for writing this. Wow! Increadibly usefull to read this from your perspective. Thanks a million times:) Krisztina, a mum of a 5 year old boy with autism from Ireland

  6. You actually used a therapeutic way of communicating with the autistic child. I think you did the right thing. It is indeed very difficult to handle autism. I am very proud of the parents who continue to believe and remain stronger in spite of the difficulties that their children are suffering.