There are things I forget to talk about with my daughter. Things that someone will mention or I’m reminded of in some other context and suddenly I’ll think – Gosh, why haven’t I discussed this with her? These are things a parent would typically talk to their child about, but that because my daughter cannot easily communicate her thoughts I, without meaning to, do not immediately think to talk about with her. This is the impact my limiting ideas about language and not being able to communicate through spoken language have on my daughter. It doesn’t always occur to me to discuss with her a great many things until I am reminded. Out of respect for my daughter I am keeping this post purposefully vague.
I am moving along here, learning as I go and continue to make a great many mistakes. I have never deluded myself into believing the – making mistakes – part will end, the most I can hope for is that I won’t continue to make the same mistakes, but even so, I do. I seem to need to repeat the same lesson many times before I am able to make lasting change. It is a mistake to believe non Autistic neurology does not have trouble with transitions, generalizing information, learning something taught and immediately changing behavior to demonstrate this knowledge. I will often know something, yet it will take many attempts before I am able to put that knowledge into practice. You could say that my actions lag way behind what I know or believe.
In the 12 step rooms there is a saying – “self-knowledge avails us nothing.” What is meant by this is that we can intellectually know something and yet that knowledge does not produce a change in the way we behave. The only way to change is by doing something differently. How easy that sounds and yet, look around, people have struggled with this since the beginning of mankind. Addiction is the obvious example, but there are other, far more subtle things that are great examples of how we want to do something – eat better, exercise, be polite, more friendly, etc – we know it would be better if we did whatever it was, only to find ourselves unable to do it. Behavior modification, were it as helpful as many seem to believe, should have helped anyone who has ever attempted to “just stop” and yet it has shown itself as useless. Unless behavior modification is used in its most extreme form, which I would argue is not dissimilar to torture, in which case it will and does produce short-term change, though at a terrible cost to the person being “treated”, it does not help those of us who are trying hard to change our less than ideal ways of coping with discomfort, fear, pain, and suffering.
Change is hard. Changing the way we act is even harder than changing a belief. Yet, we expect and ask children to change all the time. We tell them something and then when they do exactly what we’ve asked them not to do, we wonder why. Except that they are behaving the way most of us behave. Adults are no exception to this. Now add a neurology that makes communicating more complicated and all kinds of misunderstandings develop. Conclusions are drawn, ideas and theories are created to explain, and yet…
Recently Emma was asked about something that happened at school. She wrote, “if every time you tried to speak, the wrong things came out of your mouth, how would you feel?” We live in a society where people knowingly say and do hurtful things all the time, yet those people are not put in institutions, given random medications against their will, labeled as “low functioning, ostracized, given electric shocks, condemned and treated as though they were criminals. I’m thinking of a number of radio and talk show hosts whose ratings soar the more outrageous and venomous they are. These people are rewarded for such behavior! I’ve never met a parent who said, “I want my child to grow up to be rude, disrespectful and a bigot.” And yet…
Today I will suggest a few topics and ask both my children what they’d like to discuss.
Em & N. ~ 2010
Emma's Hope Book 
Yep. Totally get this. I do the same thing. In my head I am all “presuming competence” and treating him age appropriately, but when it comes to putting it into practice it is HARD at times. It is something I have to be very conscious of.
So well said.
I can definitely relate to your post. Sometimes I “think” I’m covering all the bases only to learn I’ve left a vast gaping hole in regards to one topic or life skill. Or I’m constantly pushing for my child to do something I am also struggling with but on another level. I really enjoy your blog. It really stands out among so many about ASD.
Yup. Me too.
And in response to your last two sentences – thanks so much. What a lovely thing to say!
You are welcome. Your blog has a great tone. It is informative, empathetic and a great read. I’m all for venting but I think we can use our blogs about ASD for informative and uplifting purposes, encouraging others as we move along this journey.
Lilka
Thanks so much Lilka. Your kind words mean a lot to me.
Having a facts of life talk with a person with autism can be quite interesting. Learning independence in self care/personal hygiene is essential and a survival skill. A lot of information can be picked up from the environment, and not all of it is good. We have found that it is a lifetime challenge to transfer family values to our children by example, conversation, and life experience. Sometimes we have found it necessary to be extra protective due to the disconnect between knowledge and behavior.
I’m still trying to figure out what age appropriate for a 4yo is…I’m never around other kids really, and my only experience was 12 yrs ago with a child who was Es polar opposite…at 4 he didn’t talk like a 4yo either, he talked like a mini adult. So i often wonder if my speech infantalizes him, but on the other hand he is the baby 😉 as always i wait not so patiently for the day he can give me any little peek into his mind as Em does. He does not yet have any spoken words…and in some ways I think that completely one way or the other is easier than in between. I cant imagine what it must be like for Emma for people to hear what she says with her mouth and make decisions on her capabilities, rather than hear whats in her mind.
I really like the “Your X-Year-Old” book series for talking about age-appropriate stuff and “normal” developmental stages:
http://www.goodreads.com/book/show/456055.Your_Four_Year_Old
I wish they had these for adults!
thank you. I am very lucky that my autistic child is the youngest out of three kids in the family. so I have some sort of guidelines in my head.
that helps a lot.
but on the other hand I can see that other parents are struggling because they have been told by therapists again and again: o, its too early, o, he is not there yet… o, wait another 6 months before we start doing this or that.
.o, social story? no she would’t get it, her language is so behind.. she wouldnt understand how to be polite.
i better stop.. because this upsets me greatly.. to the point that quite often I have to give some of my materials to other parents so they will do new program at home in order to convince those “professional” people to try.
Our children can learn but we have to give them every word.
Every word.
And I am talking about visual representation of the word.
now, if we talk about expectations.. here is a story
the girl on playground pushed another child.
not a big deal?
right?
it was a big BIG deal only because the girl has Down syndrome.
I completely relate to this, it is hard even with the knowledge, to not fall back into stuck habits, change is a process for sure, I’m so grateful my kids are patient with me :). Thank you for bringing this to light.
Those ‘habits’ are only habits in name, not reality. I am not sure what to call them, for much of such behavior is NOT conventionally learned.
The same can be said of most socially-inappropriate autistic behaviors.
The answer to these behaviors is the same for autists and their Normal betters: conscious effort, this to become a totally-different being every waking minute, all the while being cursed as a ‘racial traitor’ (a traitor to the human race).
There is the divergence: autists are born with that ‘mark of Cain’, and they must erase it daily by erasing themselves and laboriously erecting a construct that – hopefully – pleases their Normal betters.
It’s usually impossible. No amount of hard work can have the totality of the effect of a brain transplant.
In contrast, the Normal person breaks rank (and becomes a traitor in the minds of his/her fellows) whenever he or she dares to approach outgroup members with the goal of true comprehension ( even if there IS an ulterior motive, such as ‘more-effectual exploitation’).
The reason for this latter is simple: at the unconscious level, ALL deviation from ‘the master’s will’ reduces the ‘magical effect’ of ‘perfect unity’. Hence absolute conformity in all possible ways – where there is effectively one organism, that being the leader and his narcissistic extensions – is the sole means of achieving an ultimate state of individual and collective (social) power.
Power is life in the unconscious, and in-group bias is instinctual; and to break all of those instinct-driven
continued from previous post
instinct-driven rules is one of the most difficult things any person – regardless of mental configuration – can do.
For the autist, self-erasure has the sole benefit of becoming easier to ignore.
For the Normal – that means losing everything – to give up one’s supposed place in an earthly Heaven to descend into an unearthly Hell.
Where the Monsters are – people like me.