Questions about Autism?

Question

My younger brother (age 11) has moderate to severe high functioning autism. When I lived at home, we NEVER talked about it, we just referred to him as 'different' (terrible I know) so no one ever answered my questions about my brothers autism. I live on my own now, but this topic is still taboo for my mother. So, here I go:

Is Autism genetic?

Are family members of people with autism more likely than other to experience 'challenges'? (Because I have severe Learning Disabilities and my mother also has learning issues, just not as severe as mine)

Is it normal for a nonverbal Autistic child to just start speaking one day? (When my brother was nine, although odd and monotonous he started speaking in full sentences out of the blue one day)

Can people with moderate to severe high functioning autism ever be a part of normal society, or will my brother be in a home or my mothers care forever?

What does 'high functioning' mean exactly?

Thanks so much for answering my questions

Answer 1

You asked exactly the right person. I have autism and am on the moderate needs part of the spectrum. People with autism should NEVER be referred to as different that is just unacceptable. We may have differences in that we learn things slower than other people or have unusual habits or routines but on the inside everyone is the same and we all have feelings. Many people do think that autism is genetic but it definitely is not. People on the extensive needs side of the spectrum may have problems such as down syndrome and cystic fibrois and those are genetic but they are both diseases. Autism is not a disease it is a disability which is very different that a disease. The differences in this are that down syndrome and cystic fibrois, although very difficult it is possible to cure them through major medical treatments unlike autism whih is a lifelong experience that always stays with you. A nonverbal autistic child can absoultely start speaking out of the blue one day. People with autism can be very gifted and talented. I am not bragging about myself in any way but I taught myself to read at age two, read full sentences at age three, and was using the DOS program on computers at age four. People with moderate needs can be a part of society and I am not going to call society normal at all! People with autism just generally have a harder time because when you get to college unfourtanetly the law that makes sure you have every service you need in high school known as the IDEA, drops once you get to college and the only ones left are SEction 504 and the ADA. This means you can still get "reasonable accomodations" like extended time but unless other students get them an open-note test is out of the question. Also what I find unacceptable is discrimination against people with autism or any disability. I have learned sadly that a person with a disability makes three times less than a person without a disability. People with extensive needs generally do end up in the care of their parents throughout their life or they can be put into an adult respite care. High functioning autism just means that they just might not have as many odd habits as people on the very low side do. Please don't say that you have severe learning disabilities. You would not have been able to have asked your question if this was true. Let me also say that I am so sorry about what you are going through. Autism and learning disabilities are very hard to cope with sometimes and you did the right thing by asking this question! Also please never hesitate to e-mail me if you have any further questions, comments, or concerns!

Answer 2

The causes of autism are unknown. There has been some link to childhood immunizations, but over the past few years the makeup of the immunizations have been changed to minimize the risk. At times, autism seems to have increased prevalence within a family, but in most cases it is limited to only one family member. In the US 1 in 150 people fall within the autistic spectrum, I believe.

Although I do not know of a clear link between autism and other disabilities, there may be similar factors that can contribute to a variety of disabilities (environmental, etc.). Also, autism can present similarly to other disabilities, including nonverbal learning disabilities, etc.

Autism encompasses a broad spectrum of abilities, and each person with autism, in my experience, is vastly different. Although not common, it is not unheard of for nonverbal Autistic children to speak suddenly or have sudden increases in verbal ability. Often, people with autism report feeling imprisoned by their own bodies. The cognitive abilities that many people with autism have are, in general, significantly higher than verbal ability. Essentially, then, people with autism have a much higher intelligence than they are able to express. Often the frustration caused by this gap can manifest in various behavioral coping patterns.

Regarding functioning in society, again each person with autism is very different. Within the next few years (specific age determined by the state you live in), the focus of your brother's educational plan will shift to a more life-skill based program. During this time, long term goals will be set and his school focus will shift to preparing him for as much of an independently productive life as possible. He is entitled to this education, legally, until he turns 21, at which point he will get other financial and community support. There are many adult living options that are very different from what you probably envision as a "home."

High functioning means that along the "autistic spectrum," your brother has somewhat advanced ability. People whose abilities fall "lower" on the spectrum, for example, may have severely impaired to nonexistent verbal communication, self-care ability, gross/fine motor control, etc.

I admire that you are looking to find more information so that you can better understand your brother. I can't think of a website off the top of my head, but a good book in terms of understanding life with autism (although probably a different level of functioning on the spectrum, called Asberger's Syndrome) is "The Curious Incident of the Dog in the Nighttime."

I hope this answers some of your questions...

Answer 3

I'm an adult with Asperger's, my older sister is what would be called high functioning autistic with speech, and I also have a nephew that's similar to her in that respect.

"High functioning" is a label that varies in meaning depending on whom uses it: for some reason, people confer the ability to speak and understand typical spoken language as being required to be labeled "high functioning" which is not exactly useful in all cases.  That's much like saying someone being born deaf is logically "low functioning" because they can't hear regular speech, make much sense of it, and therefore also speak it.  I expect you've had enough experience with deaf people to know how false that is!

Is it normal for autistic people that previously weren't verbal to start talking one day?  Well, it seems that's actually rather common, but as to why, perhaps your brother simply didn't feel it worth the effort to speak until then, or something suddenly snapped into place to make it more feasible.  I expect he was understanding quite well what was being said to him before then, though perhaps it was largely filtered out by what's known as sensory overload and perhaps something known as Central Auditory Processing Disorder, which is a common issue.  I myself spent several years as a kid in elementary school taking speech therapy, and a large part of that is due to simply not being able to fully sense what my body is doing, combined (based on long-term observation) that I can have a heck of a time making sense of what someone is saying due to the fine nuances of intonation and pronunciation, despite the fact that (unfortunately, quite often) my hearing range exceeds that of what's administered as a standard test (which goes up to 8 Khz) and exceeds the frequency range encoded on a CD (22.05 Khz on a CD) and I've tested it to 32 Khz, and certain frequencies even at fairly low volumes cause me pain.

As far as your brother is concerned, his speech likely doesn't seem at all monotone to him: he can clearly discern the changes in frequency of his own voice, at least in that narrow range.  Outside of that range, it may vary quite a bit.  I have personally run into people whose voices were mostly in a range that was painful for me to listen to: this can cause a problem at times, as you can imagine.  Is your brother "different" ? Absolutely!  Sadly, there's a lot of people out there that translate that the differences are those signifying a disease process, which isn't so, no matter how much they want to tell you that, and they have these horrid notions that the differences must be stomped out of existence at all costs, because they aren't "normal" to which I say, how many "normal" people are still killing each other in massive wars over petty things, and by contrast, how many autistics does it take to band together and fight a war to the death?  (I suspect you're laughing at the oddity of that notion right now: a bunch of autistics taking up arms and collaborating on such a social/anti-social task that goes against their nature to such an extreme).  How many autistics go out of their way to ostracize people for some meaningless thing, like their financial status?  Think how much simpler politics and international relations would be if autistics were in charge, with their no-BS way of stating things, and not using "weasel words" on such a regular basis: there'd be so much less in the way of stupid misunderstandings, at least.

I also have other learning disabilities to deal with, as well as coordination, but I've done my best to use them as a strength, as a side-effect of how I compensate.  I'm a bit dyslexic, which has caused me all sorts of issues (higher math is very tricky to get correct answers if you make a dyslexic type of mistake reading or writing math bits, because there's no context to auto-correct with) and a (to my understanding) recently listed thing called dysgraphia (unable to readily write complex things and do the manual work of coordinating it: means nothing about understanding the concepts, though this may be another form of executive function that's affected in motor control planning) which has made life rather... entertaining.   I also have sensory issues, and I know from experience about sensory overload: I consider it quite likely your brother was largely in a pattern of sensory overload before he suddenly started speaking: when you're in that state, you are overwhelmed with processing all the incoming output to the point where it is difficult to also process how to control movement, etc. and you tend to go into a state that's not fully thinking, acting largely on instinct, and the fight-or-flight instinct may be controlling things.  It isn't a pleasant thing, and unfortunately, my observation for myself is my mind doesn't have an off switch to turn it off, and I can't readily filter out stuff I'm not interested in processing, either.

Now, can your brother eventually be in a home or in your mother's care forever?  That's something that simply can't be answered at this time by anyone.  Autistic people (like everyone else) mature (or not) in all their functional areas in a different path than everyone else: autistic people just in general have a wildly different path that they take compared to more "neurotypical" people (like yourself) and all have some varying degrees of strengths and weaknesses.  A large part of what will determine his ability to manage on his own is how well he can deal with short-term and long-term stress (as well as sensory issues, because stresses internal and external contribute to sensory overload), and how well he's managed to learn the vital requirements for life outside of the parents home.  My older sister can ride a bike, for example, though it isn't exactly fluid and fluent in the bike-riding language, you could say.  However, she's very good at needlepoint and stuff like that, but she would never be any good as an automechanic.  Then again, I understand how cars work to a very low level, but my coordination sucks so bad that often it is far cheaper and wiser for me to earn money with my strengths and find someone else to work on it.  I can now type at a much faster rate than most people, but it took me about 15 years to go from hunt-and-peck to full touch-typing (I was never able to get a regular typing class: the special education department had other ideas for me: little did they suspect I'd end up making my living by typing!) and as another data point, as I get older (I'm currently 36) my dreams get more and more vivid as to what I can visualize, which includes entire books of my mind's creation that I can read, often pages out of math books of my creation, etc. so I can't help but think that autistic humans prove an observation about higher mammals and animals that have long lives and long maturation periods: the longer it takes them to get out of a helpless state, also the higher the total ability to learn and be intelligent:  look at elephants as one example for long-lived, mostly helpless (though they walk sooner) and then look at alligators, which are pretty much self-sufficient out of the eggs, but aren't all that smart at their smartest.  It may take a very long time, perhaps not in his lifetime, but he may very well grow up to be quite independent, if left to his own free will: and that's where the real problem can come in long-term.  Society is more than likely not going to ever allow him full self-determination, and he's not likely to be taught everything he truly needs to know to be as self-sufficient as possible, and I'd suggest you look up the concept of "learned helplessness" where if someone is told they can't do things for long enough, they'll learn there's no point, and be helpless one way or another.

I can also tell you that the biggest problem with him attempting to integrate into society isn't on his side, but everyone else: they'll expect him to conform to how everyone else functions, and they likely won't even consider meeting him part way.  The curebies (those that have this idea that autism is a disease that can be cured) often have the thought that as soon as an autistic person appears to act "normal" that they're no longer autistic.  Sadly, all that's happening is that the autistic person is living a lie all the time, and pushing themselves much harder than others could hope to understand, and trying to process things as though they're "normal" will wear them out, even if they can appear to do it quite well for awhile.  The psychological damage simply isn't worth it.  The wisest course of action for any parent is to teach their children how to live in a sustainable way, but that does not require that they appear "normal" just that they have survival skills.

I'm currently working as a developer on a database that is designed to work on the largest database set (or at least the top 5) on earth currently in use: I would judge that it's a lot of my autistic traits that makes me best-suited and qualified for such a task of dealing with the complexities, because of the depth I get into things.  I see it as a way to "get paid to perseverate" :P

(Edited to provide a useful link provided by autistics for more inside perspective)