Speech presented in May of 2002
What Is So Hard about Speech for Autistics?
by Patty and Jared on the subject of Adult Autistics, Communication, and Peer Relationships
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Patty's Speaks (Her Introduction)
Hi! I'm Patty. I have two grown children, 25 and 27 years old.
"Grown children" sounds funny, but when do your children really grow
I was married for 17 years, then on my own for 20 years. Jared found me on the Internet, and convinced me to move to Atlanta from the tiny desert town I had retreated to.
I spent 25 years working, doing clerical work or writing for a living.
I am autistic, and was that way before the combined MMR vaccine came out. My aim here tonight is to explain some things about adult autistics to people who have only experienced child autistics.
Jared's Speaks (His Introduction)
I could not speak understandably until I was 11 years old, a sure sign that I was not normal.
I was a mediocre student, with occasional moments of brilliance such as the time in the sixth grade when I built a self-learning tic-tac-toe machine. Integrated circuits were unavailable then, so I built it out of paper cups and beans, and yes it learned to play a mean game of tic-tac-toe.
In college I neglected homework and studying, I misspent, I mean spent my time playing in many chess tournaments, even becoming state chess champion one year.
After college I spent a few years as a chemist, then I went back to school to study computers where I finally did good.
After working as a software engineer for twenty years the company closed and I was laid off.
Throughout my life I was somewhat socially inept.
Three years ago my nephews were diagnosed with Aspergers.
I thought I might have Aspergers, after all my nephews and I are related, but alas, the definition of Aspergers did not quite apply to me, leaving me confused about who I was.
Patty Speaks (remarks on how DSM defines Autism)
When adults first find they "might" be autistic, they have a huge question about the difference between autism and Asperger's syndrome.
The first assumption is that - "because I talk, and autistics do NOT talk" - I can't have autism.
The Diagnostic and Statistical Manual, version FOUR, states two conditions that Autism and Asperger's syndrome share:
1. Some impairment in connecting with other people and sharing
emotions and information
2. Perseveration - - a restricted, stereotyped or inflexible
preoccupation with one or many things
Children with Asperger's connect with the world around them and communicate in unique ways. When they reach school age, their teachers do not understand their behavior, and complain about it. These children tend to act somewhat between where the so-called "autistic" children are and where so-called "normal" children should be.
If you read the DSM IV, Jared and I clearly do not, on the face of it, show the behaviors listed for autism. Those descriptions of how small children with autism ACThave nothing to do with how we have learned to appear by now.
Adults with autism need to remember that the DSM IV is a very political document. Professionals like to work with neat categories and clear cut-off points. The politically-correct definition in the book does not create the condition.
Jared Speaks (remarks on how DSM defines Autism)
I was lucky to learn about the real autism as opposed to the DSM 4 version.
I heard on National Public Radio that people with Autism are frequently face-blind, and Eureka, since Im face-blind, I knew I was on the Autism spectrum.
I got in touch with the state ASA chapter, and started learning about autism then.
I learned that autism can take many different forms, and is a spectrum disorder.
I now know that labeling a person is not an exact science.
I think its odd that the differences in the brain with 100 billion neurons is described by DSM with just a few labels.
Due to the confusing and inexact labeling of Autism, high functioning Autism, Aspergers, and PDD the label is being changed by many groups, including Centers for Disease Control, into Autistic Spectrum Disorders. I concur with this name change as this acknowledges that labeling people is not an exact science.
We will now talk about our disabilities.
Patty Speaks (her disabilities and compensating for them)
So, what is the difference between an autistic CHILD and an autistic ADULT?
Some might say that, because autism is a developmental disorder, the difference is more years of development in the brain. On the other hand, the reason for calling it developmental could be that autism seems to arise at a certain developmental stage in many or most children.
However you see it, "more years of brain development in the adult autistic" does NOT account for the fact that many autistic children advance a lot, some do not advance much at all, and a few seem to stay totally pent up inside their own minds.
In my own experience, the difference is the accommodations I have learned to make to my own disabilities. These "WORK-AROUNDS" allow me to appear to be operating in the "usual" way much of the time. But what is happening inside my mind is not the same as what appears on the surface.
The official "TREATMENT" for autism when I was six years old was to warehouse the child in an institution, and forget that he or she was
Right now, the emphasis is on early intervention, in the hope of retraining the brain and causing it to develop in a more "normal" pattern.
Again, I feel that what helped me was accommodating my own disabilities. Comparing how I function now with how I appeared as a child can explain to you how I could have been diagnosed "autistic" in 1950, yet have the diagnosis overlooked, and even disputed, as an adult.
Right now, when I interact with people:
I have problems with speech.
** I have trouble understanding precisely what sounds I 'm hearing ** I also have problems getting the meaning of the words, even after I have established what the sounds, and therefore the words, "probably" are.
My compensation is to memorize loooong sound strings and retain them indefinitely. I mean "forever." I replay conversations in my mind over and over again, looking for more meaning, for months and years. I continue processing them in the background (like a computer printing in the background) while more speech sounds are coming in to me. This causes a measurable delay in my understanding of what's said to me. In addition, I have a measurable neurological delay in actually "hearing" sound.
One more communication problem I have is lack of the usual ability to screen out background noise and focus only on the speech I'm listening to.
The result of this and other problems understanding language causes me to often take in only the LITERAL meaning of the words. I just < don't have the ability to relate everything that I hear to all the conditions around me.
So -- would I enjoy a noisy cocktail party after a drink or two? Of course not. I would be overwhelmed and stunned by the noise and the intensity of interaction. This inability to benefit from the fun times of partying is an important part of my disability - my autism.
Other senses can be impaired, also.
I have equivalent visual processing problems,
and difficulty shifting sets, or making a change in focus.
It's hard for me to form the sounds of language.
My breath control is poor,
my voice control comes and goes,
my cheeks are slack,
and my tongue isn't easy to control.
I have problems accessing my own vocabulary.
I have trouble remembering what I have already said, and
what I planned to follow it with.
Nevertheless, I appear completely normal ---- at first.
Jared Speaks (his disabilities and compensating for them)
Before I talk about my disabilities I want to state that I am much happier since I discovered autism.
When I first discovered my autism what greatly helped was discovering others with similar problems and having a mentor to correspond by email with.
I now understand myself better.
I can better compensate for some disabilities and have learned to accept others.
I now admit my disabilities to many more people, and thus feel more relaxed that now I feel I have less to hide.
Like Patty, I and my nephews appear fairly normal at first. When a psychologist first saw one of my nephews, the psychologist said he was normal, but upon interviewing his teachers and learning how he acted in the more complex environment of a classroom, there was no doubt he had Aspergers.
My parents still believe that my speech impairment caused my social difficulties, but I now believe that my speech is just one sign of a brain which is neurologically different.
When I speak I am too busy processing my speech and thoughts to get feedback from what I am hearing.
What helped me the most was 8 straight weeks at a speech therapy camp.
To change ones habits, one must work on it every day for a long period of time, not once per week. I believe the once per week speech therapy I got at school was useless.
Ironically, having a speech impediment may actually be helpful at times. Most people think that my speech is a foreign accent. When I act strange or have difficulty following instructions, they assume Im a foreigner.
I am very face-blind, something I recently found is also true of my sister and mother. This can be very embarrassing at times. I now admit it to many people, but certainly not everyone yet. I started teaching chess to elementary school students. And I find this one of the harder disabilities to deal with. Maybe next year I will admit it to my students, and if I am lucky they will start wearing name tags.
I have a difficult time with social interactions. What helped me was being among mostly intelligent people who are good examples that I could imitate. I hate to think what I would be like if my friends were misbehaved. Like many people on the spectrum I am very honest, and have a difficult time dealing with dishonesty or politics.
Some people would say that I have a developmental disability, and
that I have grown out of it over the decades.
That's nonsense. The disability is still totally, 100 percent present.
Two things HAVE changed though:
My ability to compensate for the disabilities
My understanding of how I "should" be.
Fifty-eight years down the road, I do a great job of mimicking the
person my mother wanted me to be.
Teaching today's children with autism how to recognize the problems they are having, and how to work around them, can help prepare them to take whatever place in society that they want to take. Compensating can make it possible for many to be economically productive, IF they are accepted in the workplace by their neurotypical peers.
So far, it looks like early intervention with redirection of the brain helps many, in addition to those helped by compensation. It seems that both approaches might be very valuable. For this, testing needs to be done to determine precisely what disabilities are there.
The early compensatory pressure on me was social and verbal, so I learned to improve in those areas. Research seems to be needed into the exact kinds of compensations that would help us. Then we could maximize the chances for each of us to succeed in owning our own life.
Having developed "surface sociability" doesn't make me functionally social. I'm only now learning that I can ask other people to help me solve problems, and just starting to work with others as part of a team.
Some of my social difficulty is due to a lack of experience in interacting with people. The catch is that some social tasks need to be taught BEFORE the interaction can happen. It is so hard for us to interact, and many years or decades pass before we're ready for it. That keeps us as autistics from accumulating "as much" interaction as others do at the same age levels.
If "Practice Makes Perfect," we are missing a big part of the Sociability Equation.
QUESTION: Why would anyone want to do most of their communicating with others through the internet, and not at luncheons, parties and afternoon teas?
The internet has a lot of advantages for people with sensory,
and mechanical problems with speech.
First, there is no nonverbal communication on the internet -- meaning there is not so much implied meaning to deal with.
Also, internet communication is written. A person can continue seeing it and trying to process the meaning;
it doesn't evaporate like sound does.
Internet chat rooms are specific - - people with common interests find one another -- people interested in ham radio or computers or depression often find they relate to others in the room who state that they are on the autistic spectrum.
ASIDE: Yes, you can eventually stop being ashamed of your autism and talk about it in normal conversation.
Specific chat rooms are established on the internet for autistics only. As pointed out by Martijn Dekker of the Netherlands, an "autistic culture" has developed in the electronic arenas where autistics gather in groups on the internet.
On the email lists and in the chat rooms, when a large group is gathered, say 15 or more autistics, there are recurrent themes.
These topics arise frequently, and there is a full consensus on the answers.
--- SHOW WHAT A CHAT ROOM LOOKS LIKE ---
Believe it or not, neurotypical people also have recurring themes in their conversations (whether they realize it or not).
There's "What's the Score?"
And "How did it turn out?"
Plus "Did you SEE the dress she was wearing???!!!"
And "Ain't it Awful (regarding politics, school, traffic or whatever)!!!"
Every person's first concern when they first join autistic groups as
an adult is----( "HOW can I be autistic if I can TALK????") .
The additional endless, recurrent themes of autistic culture are more
in the direction of
"US VS. THEM" (meaning neurotypicals) ----
questioning whether THEY are really, deep-down inside, "better" than we are?
"How can we be having this conversation if we can't relate to other people????"
In between those two eternal, repeating discussions of autism-hood lie massive group perseverations over unimaginable minutia for hours, and even days, at a time. Everyone present goes into finer and finer detail on almost any subject that was small to begin with.
The first autistic culture theme centers on the fact that we autistics, as a group, see the larger culture around us as unbearably duplicitous and political.
Our struggles with straight communication don't leave us energy for lying. Our fight to survive in a school and work world whose rules are set by people with much greater abilities in many areas leave us aghast at what we see of political maneuvering and of people using other people for their own ends.
A good question: Are they, "indeed," BETTER than we are???
I recognize that this question under-states our differences, our disabilities. However, it IS a general theme of autistic culture nonetheless.
The second common theme of autistic communication is to question how the group can function or continue "at all" - if we, as autistics, by definition do not relate to other people!
It's true that there are autistics out there, typing away into cyberspace, directing words into the darkness, who do not understand at a deep level that there are other BEINGS equal to them in intelligence and emotion. Some actually cannot be sure of the difference between a complicated machine and a being --- and occasionally between a beloved object and a being. These people can't take "seriously" any statement of need or desire from or about any other person. They sometimes treat possessions with a love and care that is all out of proportion to their value in common terms.
After chatting on the internet for some amount of time, many of these people begin to understand that there are OTHERS out there, not just typing fingers. And they suddenly develop empathy in relation to others who are brainwired the same way they are.
With enough practice in their sheltered internet spaces, autistics learn to talk among themselves,
to appreciate each others' fears and hopes and depressions,
and to support each other in words at coping with the neurotypical world.
They do this on their own terms, by typewriting into a machine and
waiting to read the answer.
I'm NOT saying that this empathy necessarily still applies when the same people are trying to relate to a real-life person, especially someone in authority,
or someone who uses a lot of body language and fewer explicit statements.
Another theme that repeats consistently is that< we autistics are much more different from each other than we are alike. That difference is in spite of having our four or seven or however many "autistic traits" according to the Diagnostic and Statistical Manual.
We are SO unlike each other that it reminds me of how people get "more like themselves" as they age. Our oddities are influenced by our limited ability to interact with the world outside our bodies. That is what we share with the aging population, who are slowly losing the fine edge of their hearing and vision capacities.
It appears to me that the reason for autistics being so complex, and
so different from each other is that,
in addition to having the usual human differences,
we each have our profound disabilities ---which are all different --
PLUS our specific individual ways of learning to compensate for each DIS-ability. This makes us VERY complex, especially compared to < people with across-the-board abilities.
Speaking of ABILITIES _..
What makes a "successful person" in our society?
We can probably agree that the ability to earn a living is a large
part of that.
I would say that the thing that most separates more highly-compensating autistics from the place they would like to occupy in our society is Executive Function, or in our case,
This is also what separates autistic children from autistic adults,
in a backwards sort of way.
My "apparent" normality at my present age would give me a great chance of success in the commercial world if I had Executive Function skills to match my appearance.
Unfortunately, I haven't had much success in learning to compensate for this brain-wiring problem.
It's perfectly OK for a child to lose track of time, spending three hours watching tadpoles hatch on a summer afternoon.
And a child only has to EAT his breakfast, not cook three things at once and have them all ready for the family at the same time.
And a child never has four six-million-dollar projects in varying stages of development,
Each needing attention at exactly the right moment.
Children don't have to deal with deadlines and multitasking.
My executive function at 18 allowed me to be employed as a clerk.
At age 35 it allowed me to be employed as a technical specialist,
with a lot of support and nagging from my boss.
But I will never grow into a production supervisor,
a project manager,
or even an office coordinator.
At my current age (pushing 60years, folks!), no one can see me as the 18-year-old worker I really am inside.
In REAL LIFE terms,
I have passed the point of being able to land a job that is within my
ability to perform.
When interviewers meet me they're convinced I have administrative skills. If they hire me, they invariably push me into positions I cannot do properly. Then I get treated as if I applied for the job fraudulently. They believe their instincts, not what I actually tell them.
The other side of this "aging into unemployability" is "If you aren't executive material, then we can't hire you." There seems to be no place in our present world for workers who can do one thing
The answer, of course, is acceptance of individual differences in people. Not the current "Everyone is the same, everyone must be able to do every job."
I am autistic, and I am an adult. I can do a few things very well indeed. There SHOULD be a place for me to do those things, so that I can contribute to society.