This Made Me Cry

[welsummerchicks]

Like ropo, I am a little puzzled by this.

Once an incredibly knowledgeable theologian was having a conversation with us about miracles. One person broke in and said, 'I don't believe in miracles, I believe in hard work'. The theologian said, 'What do you think miracles are from? They're from hard work!'

It doesn't completely make sense to me. I am also a little doubtful that it is exactly as presented. As presented, a profoundly disabled person suddenly was able to type out her thoughts and the thoughts seem to be exactly what a parent would wish more than anything in the world.

However, the typing reads nothing like any autistic person I've ever heard or read express him or herself in any way, shape or form. It reads like it is written by a non autistic person. There is none of the special interests or 'concrete' use of language I expect, and then there is the very natural sort of sentence structure. That is what I find most puzzling. It is also puzzling that she generally types very slowly, even over some hours. I'm not sure what to make of that, but it increases the potential for prompting and suggests it is not done with great fluency or spontanaiety.

Her spelling, punctuation and wording does seem to get cleaned up for the presentation. That makes me uncomfortable. I'd rather see her original typing. I'd also like to see more clearly how much and what type of prompting goes on.

In a lot of the training autistic children get, they learn to make 'canned' responses. They often repeat these. For example, my favorite boy often said, 'Howareyou' but he was TAUGHT to say 'howareyou' and he didn't understand other people's feelings of gratefulness or reciprocity in conversation.

Recently, there has been an effort to move beyond the sort of 'howareyoufine' training and there has been a larger emphasis on teaching autistic young adults 'how other people feel'. This is very very difficult for many of them. A friend of mine has her son in a sort of 'empathy-relationships' training where he gets a lot of practice in how other people feel, and how his actions make them feel. It's extremely difficult for him to understand other people, and he is very, very high functioning.

The dream and hope of almost every autistic child's parents is that somehow, inside, there is a 'normal child' that is 'trying to get out'. Trying to find a way to communicate.

After spending much of my life around autistic children and adults, I do not feel that there is a 'normal child inside', but an autistic child inside, whose perception, thinking and feeling is different in profound ways from neurotypical people. I think some of their frustration results from not being able to ask for things or tell others when they feel ill or upset.

My wish for them is that they be happy and safe and adjust to whatever sort of life makes the most sense for them. A profoundly affected person cannot live independently and earn a living, but I also think it is a shame if a mildly affected person is prevented from being as autonomous and independent as he can be. I would like for every child to get as much training as this child in this video got. And I'd like for every autistic child or person to be in a safe, secure environment where they can become as much as they can be.

" were in fact instilled into her psyche and one day it all came together for her. The computer was a vessel that allowed her to have a voice "

I don't believe that people have a psyche, and I don't believe that things 'come together' in this way.

I have absolutely zero belief in facilitated communication. It has already been completely debunked. People who have promoted it should be utterly ashamed of themselves.

The parents say this has no similarity to facilitated communication. However, in several videos of them, I did see someone prompting her as to what letters to type. So I don't think all of it is completely her own indepenent thoughts. How much of it is her thoughts and how much it has been shaped by someone else, I can't say.

The words, however, are not really what I would expect.

What happened with this child was that she had from the time she was 2 years old, ABA, PECS and tons and tons of other training, and eventually, she responded. She is proof that evidence based therapy, early intervention and hours and hours and hours of very highly trained therapists devoting themselves to working very, very hard with a child, can help.

She still is autistic. She STILL has very serious problems. She is still autistic.

She has impulses and has a lot of problems controlling her behavior. It appears that for her, it is difficult to form words and sounds with her mouth. Typing seems to give her an alternative to struggling with making sounds.

She is not unusual, which I think it seems very strange that she is made out to be completely unique in the world, I don't think she is.

An autistic boy I took care of, started talking at age 10, after years and years and years of full time therapy and training. It is simply that it takes these children much much longer to learn to communicate. He did not have as much trouble forming sounds as she does.

However, finding a way to communicate does NOT make autism 'go away'. This child and others like her are not 'cured' by finding a way to express their wants and needs. They may be mildly autistic or severely autistic, but they are still autistic. My boy learned to talk, but he did not learn to be not-autistic. And like this young lady he still had very, very severe behavior problems. One day, he ran across a street because he saw a bicycle he liked in a store widow. He was hit by a car and broke his leg and pelvis.

Personally, I have far less doubts about the originality of the content of speaking than typing, since typing can be assisted or prompted. Speaking can ALSO be prompted, but sometimes it's easier to tell that with speaking.

The autistic boy I took care of was considered to be mentally retarded as well.

I don't get what is the big deal with being designated 'Developmentally disabled'. Or 'developmentally delayed'. Nearly everyone who has autism has delays in some areas of development. A child who is ten and wearing diapers is developmentally delayed. A child who can't speak is developmentally delayed in acquiring expressive speech.

Even autistic savants often lack the ability to solve practical problems or stay safe in in unfamiliar situations. Often autistic people have some areas they are far more able at than others. Some can hear and understand language better than they can speak it (like Carly) and some of them have little trouble speaking but struggle to read.

Too, it's VERY common for autistic people to struggle with something for a long time and then seem to 'suddenly get it'. That's not unusual. For example a boy I worked with struggled for months to blow a feather by pursing his lips, then seemed to skip several steps and pronounce several sounds suddenly one day. it didn't matter. He still needed many more years to learn to speak fluidly so that people could understand him.

I am very, very concerned about the public's tendency to romanticize and distort autism into something it is not. There have been too many sappy movies and far, far too much misinformation spread about.

There is an absolute fascination with autistic savants, for example, even though there are very few of them, and even though the 'savant ability' seems to come at great, great cost, and other areas of thinking suffer.

The focus is all on 'how intelligent autistic children are'. Well the fact is that some autistic people appear to be very intelligent about certain things, but still have many difficulties. And a great many autistic children ARE in fact, seriously disabled, show little sign of ever being able to speak, and are profoundly developmentally delayed in many ways.

I've worked with adults who scratched themselves, attacked people, and spent the rest of their time screaming or rocking by themselves. I've taken care of adult autstics who were so severely self harming they had to be kept in restraints 23 hours a day to prevent them from doing terrible things to each other. I have hit, been bitten and defecated on.

There are some people that are so severely affected that they don't respond even to the most intensive teaching and training. For example the Greenfields spent years getting every kind of training they could for their son Noah, he remains without speech and very, very disabled. Fortunately many autistic children are not so disabled.

This child learned to communicate to some degree after years and years and years of very, very hard work. That is what this is about. Hard, hard work. I can't tell for sure exactly how much of her typing is her own, creative, original work, but it makes her family happy and that is the important thing. It's tough enough to have a child with a disability. Parents always worry what will become of their child after they are gone. If something cheers them in this long, long marathon, so be it.

 

[Cetawin]

Thank you for sharing that inspiring story...the human will, love of family and faith can be bring about all sorts of wonderful miracles.

 

[Cindiloohoo]

I wonder if she actually has autism. Her issues sound more like a nervous system disorder. She said a "sensory overload" was her issue. "Her brain works differently." I have been around many autistic children, several of which are considered "high functioning" and her issues just seem totally different. Every autistic child I know has issues with empathy...she apparently does not have that problem. I don't know. They said she is more calm now, her behavior is better...I'd want to know why. Autism doesn't fade away when a person begins to communicate. Something about this just seems ....fishy.

 

[geebs]

As a parent of a teen with autism... I totally get it... My son is very lightly impacted but I would almost rather he wasnt' because ppl misunderstand him so much of the time..... He really gets the short end of the stick because ppl don't know that he can't read their expressions.. He is socially defunct.. I loved this video.. thank POL

Cindilouhoo: I get it... It sounds right for someone with intense therapy. Must have taken a lot of work to get so well integrated... Sensory overload... yep... The computer opens up a lot for Autism... I know it had a profound affect on my son who cannot function in a regular classroom due to sensory overload... The looking ppl in the face etc.. Banging the head, hand flapping... I am sure in this tiny little segment they didn't get into every detail but she did strip her clothes off.. that is on the frontal lobe (sensory region) which is where autism is affected... She is a whole person with a broken gatekeeper... Makes 100 percent sense to me. I work with kids with autism using horses as a guide into their senses. It is a bridge for language that works well with some children, often females who are more difficult to diagnose.

My son didn't talk until he was almost 4.... then he spoke in full sentences like an adult. He watched and when he was ready he spoke... He masters things that would boggle the mind yet the simple things illude him completely. I can see a kid sitting for many years watching... Nothing to do but learn.. I have seen it in my own house. He simply understands things without being shown... No explaination. I put him on roller skatea for the first time a week ago and he could sping and jump and twirl at high speed like he had been skating his whole life. He watched for a little bit and said... that's easy and just skated like he was Scott Hamilton.

I have had him get so stressed under pressure that he loses language completely.... he would put words together that don't belong... It is really strange... The gatekeeper just shuts and eventually if the thing causing the pressure isn't removed he goes mute.

 

[welsummerchicks]

(learned to skate suddenly....watched and spoke when he wanted to....)

That's one way of looking at it. I just think autistic kids learn in uneven steps that are not typical of how other children learn.

"I wonder if she has autism....seems like a nervous system disorder"

Autism IS a nervous system disorder, but it is also a brain disorder. The brains of autistic persons have differences in growth and development. I think most of the 'nervous system disorder' is about the brain disorder.

It bothers me, though, that the girl complained of her legs feeling like they are on fire, and bugs crawling under her skin. That requires medication, and no medication was discussed. It may be CAUSED by some medications given in excess, as well, and it's not clear that any medical treatment was provided or adjusted. However that's often left out of media stories since so many people are anti-medication and revealing that any medication is used can cause so many vicious attacks on the family. So I wouldn't assume one way or the other at this point, but those symptoms are indeed medical issues.

It also indicates her diagnosis is either partial or even incorrect. It would be surprising, I'll bet to see how she is five or ten years down the road. I would not be surprised if other symptoms surfaced.

Fact is, a great many kids are classified with autism disorders today that would not have been classified that way 20 or 30 years ago.

Autism means disabilities in three major areas - behavior, language and social interaction. A great many people who used to be diagnosed with developmental delays or disabilities, or specific language disorders, are now diagnosed as autistic.

One can see by looking at specific diagnoses trends over the years, that those diagnoses have reduced in frequency while the diagnosis of autism has increased.

It isn't unusual for a person to have developmental delays, language delays, a few symptoms that only very slightly suggest autism, and to be diagnosed with autism today.

I've even seen kids with NO behavioral problems per se, NO social interaction problems per se, ONLY expressive language problems, diagnosed as having autism. This is not unusual. One little darling boy I met was so warm and bubbly and interactive with me, I was completely shocked when his mother told me, 'Oh! He's autistic!' I thought...wow...you gotta be kiddin' me.

Where did the 'pervasive' in 'pervasive developmental disorder' go? Probably the way it goes in many of these disorders.

This is not unusual. Diagnoses of neuropsychiatric and developmental disorders (autism is defined as a pervasive developental disorder) do tend to start out very specific when first established, then broaden, then again narrow some as they find an equiilibrium as clinical data and research refines them.

But other Pervasive Developmental Disorders have not gone that way - Childhood Disintegrative Disorder and Rhett's syndrome, for example, have not. Childhood schizophrenia used to be the disorder that 'pulled 'em all in' in the 1940s and 50s. It's now been made a much more specific (and rational) a diagnosis in the last 20 years or so.

To be perfectly fair, diagnoses are 'categories' and not all people fit neatly. There are often grey areas. Especially when a person is young, their condition is still unfolding and developing.

Then there are practical issue when there are communication issues. How, for example, do you categorize a non speaking child when one can't be sure if they are psychotic or not unless they tell you? And then there is the very well established practice of giving only the diagnosis of developmental disability if the IQ is below a certain point - EVEN IF other symptoms are strongly present. Why? Because other symptoms are present in about 40% of those with severe developmental delays, and because it's hard to establish the thought content of someone who doesn't speak.

My thought is that it's possible this lady might have been diagnosed differently 20-30 years ago. She could be 'on the borderline' or even very frankly and clearly, in some different diagnostic category and be diagnosed with autism today where she would not have been 20 or even 10 yrs ago. Her main problem is expressive language, though she also has problems with impulsivity and appropriateness socially. She seems to have more understanding of what's said to her than what she can speak.

But on the other hand, it's quite tough to really know exactly how much a person understands of what is said to them, and hopeful parents often think a child understands far far more than she or he does. Often they get a lot from context or routine. It's very hard to say.

Plus there are far fewer people today being diagnosed with specific developmental and language disabilities. They have been 'pulled over' a friend of mine calls it, to the autism diagnosis. If you look at the numbers you see a drop in those diagnoses and a rise in autism diagnoses. That means that people-diagnosed-as-autism covers a much broader, more diverse group than in the past.