An AUTISM question -- have you been diagnosed with ASD?

Question

Please note: This question is *strictly* open to only those who
are themselves on the ASD spectrum. AND if you have already answered this question before, please *refrain* from answering again. This is a repeat question so as to collect opinions of the others who missed out on participation last time when I posted this question a while ago.

I am a mother of a five year old child, who was diagnosed with autism two years ago. Needless to mention, our child's wellbeing is our topmost priority. We wish to see her succeed in all facets of life.

NOW, neither my husband nor I have a history of autism in the family. While we are striving to be our child's advocate and work in her best interests, we also very much like to hear from someone who is diagnosed with ASD.

I am an ABA therapist and believe that I have studied about autism related therapies quite in depth. I have noticed that there are individuals who are against any CURE to autism.
[To be continued below...]

We welcome you to add your unique perspective here at Y!A. Your input will be greatly *valued*.

As for me, I fail to perceive why "autism" is to be equated with a certain "personality".

For examples, if I'm blind and could get the vision after having a surgery, I don't see why I would refuse to do what will be an advantage to me. Being blind is certainly not considered as a part of "personality". If I cannot see things without glasses on, well, putting on glasses is certainly not changing my personality. Kindly note, I don't mean to be rude to the least, and please forgive me if you found my words offensive. This question is coming from a purely sincere heart.

I have noticed that most children on the spectrum react very strongly to shiny objects like, say, mirrors. Well, to me, this characteristic is not a "personality", but a "medical condition".

[To be continued below...]

So, I would like to ask you why you would refuse to gain some skills [like social or language skills] that would benefit you and make you more functional in the society.

Please note, this question is addressed to only those on the spectrum, precisely because we VALUE your thoughts.

[To be continued below...]

Your thoughts will hopefully enable us to perceive things from different angles. Our 5 year child is still too young to form her own opinions and we hate to do something to her now which she might come to resent when she grows up. That's precisely why we are asking for your kind feedback.

I apologise again in case I have hurt your feelings. I don't mean to offend in the least.

Please FORWARD this post to anybody you know are on the spectrum [ASD].

Answer 1

First, I find it interesting that so far, in spite of your asking only those that are spectrum to answer, there are several responses already from those who are not.

Now...

"Personality" trait? Well, let's see what the definition of "personality" is... from Merriam-Webster: a: the complex of characteristics that distinguishes an individual or a nation or group; especially : the totality of an individual's behavioral and emotional characteristics b: a set of distinctive traits and characteristics .

Autism is a way of behaving, a set of characteristics of personality (perseveration/intense focus, passion for details, sensitivity to physical environment, comfort in structure, etc.).

Yes, there is an inability to understand social subtlety, and a preference for reduced social stimuation. Yes, there are sensory filter issues that mean that an autistic gets easily overwhelmed by stimuli that others would not even perceive.

Although many people think that autism-spectrum people lack empathy, that's not true. It is just that modeling of how to respond to people's feelings took an ugly turn early on... the autistic was corrected rather than comforted in an autism-positive way (e.g. left alone with acceptance) when overwhelmed, punished rather than given a reduction in environmental stimulation when sad or angry... all because he or she was wired to show those feelings differently than "normal," and the unfortunate thing is that an NT (neurological typical) DYSFUNCTION is to perceive honest autism expression of feelings as annoying, confrontational, etc.; and to think that such expressions from one person mean the same thing as what they feel when they show that behavior. I confused the heck out of my colleagues at work when I bounced up and down the hallway smiling when my mother died. I smile and bounce when I'm sad. I cry when I'm frustrated or angry. I cried later when I hit the angry point in the grief cycle. When my son saw me smiling that day, he said "Yeah, I'm sad that Oma died, too." Yes, I also smile and laugh when I think something is funny or I'm happy.

Using your analogy of a blind person, just as a blind person has heightened senses of hearing, touch, etc., someone who has autism spectrum blindness to social subtleties has heightened skills in other areas. Those of us that are extremely "high functioning" autism spectrum (I am diagnosed NVLD/Aspergers), have great strengths for time and space details and structure that neurologically typical people tend not to have. Our analytical skills in certain areas are heightened. Many of us go into the sciences and mathematics for just that reason.

Those that are "lower functioning" usually have "comorbid" conditions (OCD, ADHD, SLD, MR, and/or etc.) that cause additional symptoms and lack of ability to function. The actual autism is the least of their problems, even if from an NT (neurological typical) perspective their primary categorization is autistic.

Yes, there are "symptoms" that are a royal bother for us, and for the people around us. However, if you go to an autism convention, you will find that most higher-functioning autistics get along as well as a crowd of NTs do, with each other... and respect each others' need for space, for sharing "I statements" to show agreement, etc. We are perfectly well able to communicate... just in a different fashion than NTs. Just as the blind use Braille, and the deaf use sign language, we use words for their literal meanings, and don't rely on social posturing. For many of us, lying is horribly uncomfortable, physically painful, or downright impossible. Things taken as "lying" by NTs really are misperception of environment or wrong conclusions... but a firm belief in those conclusions until the evidence can be re-presented.

My son, age 13, is also diagnosed Aspergers. He participates in the high school drama club (which, with the right teacher, is a magnificent tool to help autism-spectrum teens shape more socially acceptable behaviors by creating different stage characters and applying that "faking" ability to "real life"). He is really good friends there with a PDD-NOS student in 10th grade. They get along great, and spend a lot of time laughing... even though nobody else at rehearsal gets their communication at all (I do, but then I'm spectrum).

Those who are spectrum who hate it do so because of the pain inflicted by neurological typicals (NTs)...horrible rejection, teasing, and even physical violence. We learn at an early age that no matter how "good" we are, we can never tell if or when we do something that makes someone mad at us. Many of us end up with psychiatric levels of anxiety, depression, or even dissociative disorders because of both chronic bullying, and well-intentioned "correction" that amounts to abuse. Blind people are not punished by the authority figures around them for not being able to read print or see the pretty sunset, or for running into someone on accident, nor is any other "disability" group so unpredictably and inexplicably punished when they are failing at something due to their "disability." For all other "disability" groups, that form of "correction" faded with the advent of modern science. Yet for some reason, so many still perceive autism something the person willfully does... partly because NT kids show outwardly similar behaviors for totally different, socially manipulative motivations. NTs "mirror," and only perceive what they see in that "mirror." It is rare to find an NT who can understand how autistics have individual motivations and different behaviors to show them.

Speaking of behaviors, ABA programming is essentially like the drama club... teaching the autistic to put on an NT-accepted persona to gain rewards and avoid punishment. Good ABA programming also takes autistic sensory, social, etc. needs into consideration (e.g. a quiet room, people trained to respect the autistic's personal space...even if it has a 10 foot radius, etc.). Survival behaviors are graudally shaped rather than forced. Unfortunately, I've had the chance to network with enough adult autistics who were in "ABA" programs that were not run correctly. It is frightening what they went through.

NT communication is riddled with surface fallacy that is actually representative of different, almost unrelated meaning dependent on environment, who is present, what social situation and social position each person present holds, etc. NTs ability to perceive the layering, shifting meaning, and double meanings comes "naturally" because early childhood perceptual abilities in this area were present, and practice was honed from infancy.

Autism-spectrum people have the SAME detail perception ability, but SHIFTED to physical world, time, analytical logic (e.g. mathematics), etc. That shift is a gift, and the source of such things as this very PC or Mac you are using today.

Words mean what they mean, and you use them to communicate in that way... double meanings are confusing and unnecessary, except that NTs value social posturing above the truth content of the words. Yahoo just had an article up on their front page about how among NTs gossip is believed, even with physical evidence right in front of the people that the gossip is false. This is incomprehensible to autism-spectrum people.

Do I want to be cured? NO!!! My heightened perceptions and reasoning abilities have enabled me to work effectively as a special education teacher, with very positive results with my students, although I struggle with interaction with adult staff members. I have very little trouble with parents, because they love the results I get with their kids, and because teacher-parent interaction is predictable so I can rehearse NT social body posturing and phrasing for the dialogue ahead of time (remember the drama club thing?).

Do I feel like I wish the difficulties associated with being AS would go away, that I could maintain NT friendships without fear of unpredictably, inexplicably offending my friend and losing them without ever really knowing why they got mad? Heck, yes.

Do I feel like less of a person because of difficulties interacting with NTs? No.

Would I give up the AS knowing that my strengths would be reduced... NO!

A cure is not needed... a bridge is. There is a university researcher in Cork, Ireland, who is doing her dissertation on seeking to find common ground on which to align NT and spectrum communication modalities. Brava!

The source links are the dictionary definition I used at the beginning, and the other three I think you will find fascinating.

Answer 2

Actually, I was diagnosed with Kanner's syndrome at six months age (December 1967), before the Autism-Spectrum Disorder designation was defined. For me, therefore, ASD is grandfathered.

As for a cure for ASD, I am not sure it is even possible, given new findings at the College of Medicine, University of California, Davis. In a recent study at the M.I.N.D. Institute, MRIs of the brains of several confirmed autistics showed extremely heavy neural development in specific portions of the cerebrum, in addition to underdevelopment of the cerebellum and/or amygdala--all of which are generally recognized in the neurology profession as congenital conditions for those on the autism spectrum.

Recently, heavy-metal poisoning has become an issue, since its symptoms parallel those of the autism-spectrum disorders. Heavy-metal poisoning from mercury compounds (found in some vaccines as a preservative) is reversible, but not so the congenital neurology of autism, insofar as I am aware.

I actually turned out quite healthy after forty years, a musical natural who can play any of several instruments and sing a wide variety of vocal parts. If I have a major weakness as a potential celebrity, it is a severely compromised ability for interpersonal relations--a condition common to the technical ace, thus the "geek" term used by the neurologically normal community to identify the tech ace.

Answer 3

I've answered previously, but wanted to add this. Many parents and teachers make the mistake of thinking autism is a behavioral issue. Behavioral issues in children with autism are merely a symptom. As I'm learning the hard way, autism is a complex combination of health problems. I've spent my whole life sick with various illnesses, internal organ problems, etc. that no specialist could figure out.

Take care of the biological problems first - the "behavior issues" will improve. Many parents who have done this will confirm that it works. Your daughter needs a body that is working properly before you can start tossing therapies and counseling.

Be sure to find a doctor who truly knows about the digestive, biochemical, and metabolic (liver) issues (such as retention of heavy metals) that go with autism.

Answer 4

Oh goodness, anyone that tells you autism is like a personality trait can shove it. I mean, I can certainly understand how they would see it like that, but it's not something that "shouldn't be tampered with" or anything of the like. Yes, I know a large part of who I am at this moment is partially because of the way I react to things due to having Asperger's Syndrome, but it's not wholly me. Just like being gay is not wholly me. I wouldn't want to change being gay, you know, but I'd want to change parts of it. Or perhaps I'd just want to change the way some people react to it. And it's the same sort of thing with autism. I wouldn't necessarily want to take the whole thing away, because I think having Asperger's Syndrome gives me a very different view of the world from most people, and I wouldn't necessarily want to lose that. But then I think of all the trouble I have with body language and social skills and the like, and I think that maybe I would get rid of that part of me, just so that things would be easier for everyone involved (myself included), you know?

I, for one, am quite glad that my parents had me go to a therapist. I went from ages 10-15, and then I got sullen and refused to talk, so I stopped going. I was a little angry that I wasn't "normal" and that my parents were making me "get help". But looking back on it even just a few years later I realised how much it helped me, and I started going to therapy again on my own for a little while. I think what my parents did was great... it was what they thought was best, and I know they did it because they wanted me to be happy. I'm glad they did. I've made tremendous strides in learning things like body language and subtle social cues, and I know that if I hadn't had the therapy, I would be much worse than I am now.

Try not to worry too much about your child. Do what YOU think is best. You sound as if you are educated on the matter, and I know you want what's best. Follow your hearts.

Answer 5

Hi Anna,
I'm pretty sure I haven't answered this question for you in the past. I'll make it short and sweet. There are some people with autism who have amazing gifts that aren't usually seen in neurotypical people, yet that does not change the fact that autism is a disorder. I do think it is important to encourage people with ASD to accept and love themselves exactly the way they are, but as I tell my kids, we are not going to pretend that this condition isn't a pain in the backside! It IS NOT a group of personality traits, it is a nightmare! If you find out that they've come up with a cure for it, please let the rest of us know, and I guarantee I will be the first in line to get rid of this!

Answer 6

I sincerely understand where you are coming from. I like you and I know your heart is pure. I believe the first medical lesson is- do no harm. Just be sure that helping does not become so important that you race towards a cure and cause harm :) Keep working at it :) You are a pioneer. :) My son had early intervention. He was originally diagnosed as severe with no hope of recovering, then they brought him up to possibly learning sign language to communicate, and now he reads and does math at his own level and is mainstreamed in school. We did alot of photographs of everything and he had to say the word to the photo and put velcro on all the photos and he had to take the picture to the item he wanted and repeat the word with the photo, with alot of verbal praise...but we started out placing him into a highchair in order to keep him in once place to begin the training, it was a 3x and he gets reward anyway...more like classical conditioning. Its worked really well. Just keep trying as much helpful stuff as you can. We also use medications like ritalin and resperidal to calm him down and be receptive to new instruction and school. Be protective because there are too many people who want to use your child as a guinea pig, like they wanted to do a surgery on my sons brain and put in an implant because at first they thought he couldnt hear, but he hears just fine. We had to take him to get tested to make sure he was hearing...but we had people ready to cut into him right away...I am glad we waited. :) Take Care.-Rachel.

Answer 7

Yes I was diagnosed with autism just over 2 weeks ago

Answer 8

I am special educator and am curioous about ur idea for a a cure.

Answer 9

I agree that a bridge is needed, not a cure. I was diagnosed when I was 5, because i was not " grasping" what my kindergarten teacher, Ms. Bull was teaching, and that I wanted to be by myself, not be touched, ( some things do not change, even after 35 years!!) and because I was not potty trained. As for the technical lingo i have read, I will agree with certainly 90% of it. Now for the personal aspect: I identify with the woman whose son is in drama, and has learned to fake his way to normalcy. i applaud that. Being normal, when I was a kid, was everything to my mom,who raised me single-handed. I was taken to an insane asylum, when there were still ones around, and had been given a tour, with my mom,as this was what my dr. had suggested,to place me in one, because I was thought to be crazy, and all the crazy people reaching out, grabbing at me,poking me, or the ones shuffling around,so heavily medicated that they could not function well, still linger in my mind. Every time I think of , or hear the word "normal," I get that image in my mind. I get so mad,inwardly, at people's ignorance!!! I was telling my hubby, (of 11 years, and yes, he knows i am autistic) that when i tell people i have AS, they look at me as if they expect me to thump my hand and wrist against my chest repeatedly. Or the suprised look when they ask if I can do math problems at an alarming rate, like " Rainman", I get so angry!!! First off, I can do basics, like +, -,.X.divide, and fractions, a little, but anything else, I am lost. Most people look at me with an expression with pity, like I am "locked" into this world I can't break out of, Far from the truth, I like being different, as i dont need to explain myself. Also, they look at me as if I am crazy/retarded/stupid, and treat me as such. Which is why I don't like to be around certain types of people and I find myself wanting to be around adults, not kids. Do I have kids? Yes. two, and they know what behaviors are acceptable and what aren't. For instance,repitive noises annoy the crap outta me. for someone droning on and on and on and on. i have actually asked ppl to shut up, their voice irritates me, and you should see the looks I get!! Especially if their tone, or just their voice it self, gets to me. People speaking German, ( not the person, mind u, but the gutteral language,) gets to me, while the Irish lilt is pleasing to my ears. The cartoon, spongebob, ( kill it!!!) drives me nuts, his voice, and that laugh of his! My mom told me if I didn't act like the other kids, i was headed for the insane asylum, with all the crazy's.That scared me to death. Still does, so i would rather be " odd," rather than " crazy." Another thing that grabs me, is when people hear that I am autistic, they look at me and say, with their eyes wide open, in shock, " you don't look ( act, speak) like an autistic person!" sheesh! Pleeeeeeze! Another reason i am a loner, with my kids, and the reason we keep to ourselves, is because we live in a society when Social Services are more than ready to take someone's kids if they are seen as incapable of taking care of their own kids. I certainly have had that problem, and i live in a neighborhood where women call on someone they don't like, just to get even with them. Social Services, whether they like it or not,knows i am autistic, and has informed me that I am doing great with my kids, and my kids have all they need, and want. I am a fit parent, just because I have an autistic disorder, doesn't mean i am incapable of raising my kids. i raised my oldest daughter, now 18, and she did fine. i don't like crowds, but can shop Wal-mart just fine. Why?? I am not the center of attention, and people are doing their own thing, not bothering me. i can spend hours alone and it does not bother me, in fact, I love being alone. I tend to get agitated when around crowds, ( the closeness of the people, crowding around me, make me want to move them far apart so i can have space to move, breath, think, ect,) I also do not have patience with certain types of people. Like mentally- challenged people. why?? they move , think, act, slow. As a person, I am not without my predjudices. Autistic or not, I am a human being and for over 20 years, i hid the fact I was autistic, mainly because i was afraid Social Services would take my kids, using the AS against me. As for the history of autism in your family? I am the first in mine, as well.your child is fortunate to have a mom who is a therepist. why be against a cure? i would like to see that, but for me, I have lived this way all my life and would not know any other way to be. It is not a cancerous growth to be removed, it is a part of me, not my personality. that view is harmful, just plain ingorant. It seems that autism is the disorder du jour, and I try to hide it from strangers, and even though those well- meaning , ignorant people who try to make the world a better place by " curing" us. i am not saying you are ignorant, far from it, i meant those in Social work, who have no clue, who wish to interfere in a family to make it right, according to their manuals, or those outsiders, in basic society, who seem to think that we autistic people are harmful to them. As a person, if I were not autistic, I probably would not be the cautious person I am now, and I would not be the tolerant, patient ( with my kids, anyhow,) person I am. People see me as stand offish. i am. Not because I am a snob, but because I do not relate well to others, nor do i feel comfortable about ppl or their kids. i was taunted and teased as a kid, because I was different, because I was fat, and because my father was gay, and in the small town I lived in, it was well- known who my dad was. i can understand why people want to " cure" autism, I do not think it is wise. What we need is understanding,not judgemental, potentially harmful, interference.