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InThisTogether
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07 May 2014, 2:39 pm

HisMom wrote:
InThisTogether wrote:
Not sure...but I do like that it looks like you are challenging your assumptions and seeking to see things from outside of the box. While I may not be sure about the question you posed, I am sure that you actively challenging assumptions and looking for alternate perspectives will be of great benefit to your son.


I don't understand ? I am honestly wondering where a person with excellent self-help / self-care skills, moderate problem solving skills, but zero communications skills would fit. My son may or may not, eventually, fit this profile, but I actually do know of someone who closely does, albeit he has some communication abilities, mostly via pointing, and gestures.


Sorry...maybe I am reading in to what you are writing, but it seems to me that you are looking at ...different perspectives or views. Example: perhaps instead of only feeling dread related to your son's communication level, you challenge your assumption that is communication impairments are going to automatically leave him vulnerable and you now "poke around a bit" to see if perhaps one can still go on to care for oneself (which appears to be maybe your biggest concern, which I totally understand) even with compromised communication. I see it as a shift in thinking.

Perhaps I am going back to the beginning for me and my daughter. I was very ignorant when she was first diagnosed because my only experience was with severely impaired individuals. I thought it meant that she would be sitting in a corner somewhere, rocking back and forth, never knowing what it meant to be happy or to feel connected with someone else. Once I got past the initial shock, I started finding all kinds of evidence against my initial view: that people on the spectrum can be quite happy and that although their bonds may not be like NTs, they can feel connected to others. I started changing my view of what it all meant.


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KingdomOfRats
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07 May 2014, 7:37 pm

zette wrote:
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high functioning autism is when a person has an iq over seventy, this IQ gives them a different presentation of autism.
low functioning autism is when a person has an iq under seventy,this IQ gives us a different presentation of autism.


I think this is why the DSM-5 has changed to use the terms severe/moderate/mild rather than high/low functioning. There are people who have severe autism with a high IQ, for instance. I don't think they did a very good job specifying the levels, though.

@KingdomOfRats -- you've mentioned in other threads that you have intellectual disability. By this do you mean that your IQ tests are below 70? Your posts show a lot of depth in your thinking, and use a lot of bigger words that I wouldn't have expected if that is the case. It makes me think I need to rethink what it means to have low IQ. :) What kind of assistance do you need to read and reply to threads like these?

hi zette,
am actualy diagnosed with 'learning disability'/have a recognised iq of under seventy [LD is the UK diagnosis for intelectual disability but with WP being american majority it confuses people using LD].

with reading,am unable to read anything apart from on a computer,will only pick out words of posts cant read them fully-have to make words giant so am able to visualy track each letter and then track the words and process them but its very slow.
am given support online when it comes to doing CAPTCHAS, filling in information,understanding information, and there is a parental filter program on the computer put on by the support company,am always sat with support staffs who keep a close watch on what am doing and help out if needed but have got two easy firefox addons-one which helps to understand word meaning with one click and the other to find altnerative words for another word as am often repeating a lot of words in the same posts due to not having any other words in vocab.
using a computer is natural for self,mum and dad got us [self and sister] a commodore sixty four in the eighties,although didnt get anywhere capable with computers until millenium year.

there is a lot of unknown about intelectual disability,as most research is given to the most obvious;ie those with PMLD [UK definition for profound ID],its very difficult for everyone else to get understood because we usualy have smarts,skills,noticible qualities etc,a buddy/friend of mine who is also on the NHS/social services intelectual disability team service users interview panel has moderate down syndrome and she is really gifted in speaking her mind and horoscopes;ie if someone says their birthdate to her she can roll off their horoscope and the personality traits of that horoscope in an instant, however she gets full time care and like self has id.

--severe autism with high IQ.
a good example of that woud be tito mukhopadhyay, temple grandin and stephen wiltshire in their younger years [obviously they no longer fit the label of severe autism].

the UK thankfuly doesnt relie on IQ anymore either but some groups such as the special olympics still relie on it for accepting athletes;have joined a new special olympics club in a different area to take part in competition swimming and have had to sign up again but theyve asked the pyschiatrist of mine to write down the IQ on the letter not the fact have got LD which is what iq under seventy is....makes no sense.

apologies hismom for a unrelated post.


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HisMom
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08 May 2014, 10:31 pm

KOR, your posts are very informative and give a fresh and positive perspective on autism and associated ID.

Can you share how your language / communication abilities developed ? I pray that my son will, one day, communicate at least via writing / typing, if he finds it difficult to talk or sign ! Do you have any advise / help for me on how to help develop his ability to read & write ?

Thank you !



HisMom
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08 May 2014, 10:47 pm

ASDMommyASDKid wrote:
[

If the child is pointing and using gestures, he does not have zero communication skills. Those are important expressive communication skills.

Remember also that language(and communication) can also be divided into expressive and receptive. Receptive skills count as well, even if they are largely hidden. I suspect, but do not know, as this is well beyond my particular knowledge base, that many self-help skills cannot be taught with zero receptive skills. If you are teaching a child to brush his teeth, for example: You have to teach the steps and the child has to know you want him to imitate.

Even handing the child a toothbrush as a prompt is still a type of communication, I would think. If the child associates that with "it is time to brush your teeth, now," that sounds like communication to me. If the child does it, then that shows he understood and can comply with the request. It seems like a necessary but not sufficient condition to me at some basic level.

Here is another example. When my son was young, if he wanted bread he would take me a loaf of bread b/c it was less taxing to him than vocal speech for whatever reason. (He still does this, sometimes) I know that means he wants bread. Handing me the bread in that case, is expressive communication. Me understanding what he means is receptive language.

[tangent]He still does this out of habit, or ease, sometimes, but I make him clarify he wants bread and that he does not want me to eat the bread. When he first started doing that, I wanted him to know I understood b/c it was part of showing him to trust me to try to understand what he wants. Later, I could teach him I can't read his mind, but those foundations, back then, were way more important.[/tangent]


The child I described above is a 9-yr-old with great self-help skills but nil academic and basic communication skills. He can eat by himself (if you placed the food on his plate), he can dress himself with t-shirts & elactic waist band pants independently, and he needs minimal assistance with button-up shirts and pants with belts or fasteners. He can also put his shoes and socks on, independently. His parents claim that he can brush his teeth on his own (though Mom always brushes his teeth after him), and can wash / bath himself. He is toilet trained and can independently use the bathroom. Supposedly, he also knows how to operate the TV remote and can surf his favorite channels. He can also entertain himself on an IPAD.

What he cannot do is talk. Or understand fluent language. Or read or write. Since he has good self help skills, the family insisted on academic goals on his IEP but they say there is little to no progress academically. He can identify some numbers, alphabets and shapes, but that is it.

On the other hand, he is fairly easy to manage, behavior-wise, and seems a happy kid. He can swim, so he is safe around bodies of water for a short period of time. The few scares they had when he wandered away, he did eventually get back home on his own (but not before an alarm was raised, and one time, the cops were involved). During doctor's visits, he is able to point to where he is hurting, so the problem they really have involve vision / hearing tests (he has a slight hearing loss in one ear).

I am not trying to box someone else's child into one of the categories, but for my own information, am interested in knowing if this kid would be considered moderate or severe.



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09 May 2014, 1:13 am

EmileMulder wrote:
In common layperson usage; high-functioning usually refers to someone with fluent verbal skills, low-functioning refers to someone with very limited or no verbal skills and medium is a mushy term that may refer to people in between.
The DSM-V describes autism in three levels:
http://www.autismspeaks.org/what-autism ... c-criteria
At the bottom there's a table of the three levels.
The levels are a shorthand to help describe people more quickly and accurately since "autism" can describe many very different people.

Prior to DSM-V my daughter was classified as high functioning autistic (HFA) because despite a speech delay/non-verbal she was hyperlexic and could demonstrate high intelligence and music ability.

Now that many former Aspies call themsleves HFA reflecting the DSM-V Level 1. It would seem kids like my daughter are more likely to be classified now as moderate autistic or level 2.



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09 May 2014, 6:47 am

HisMom wrote:
ASDMommyASDKid wrote:
[

If the child is pointing and using gestures, he does not have zero communication skills. Those are important expressive communication skills.

Remember also that language(and communication) can also be divided into expressive and receptive. Receptive skills count as well, even if they are largely hidden. I suspect, but do not know, as this is well beyond my particular knowledge base, that many self-help skills cannot be taught with zero receptive skills. If you are teaching a child to brush his teeth, for example: You have to teach the steps and the child has to know you want him to imitate.

Even handing the child a toothbrush as a prompt is still a type of communication, I would think. If the child associates that with "it is time to brush your teeth, now," that sounds like communication to me. If the child does it, then that shows he understood and can comply with the request. It seems like a necessary but not sufficient condition to me at some basic level.

Here is another example. When my son was young, if he wanted bread he would take me a loaf of bread b/c it was less taxing to him than vocal speech for whatever reason. (He still does this, sometimes) I know that means he wants bread. Handing me the bread in that case, is expressive communication. Me understanding what he means is receptive language.

[tangent]He still does this out of habit, or ease, sometimes, but I make him clarify he wants bread and that he does not want me to eat the bread. When he first started doing that, I wanted him to know I understood b/c it was part of showing him to trust me to try to understand what he wants. Later, I could teach him I can't read his mind, but those foundations, back then, were way more important.[/tangent]


The child I described above is a 9-yr-old with great self-help skills but nil academic and basic communication skills. He can eat by himself (if you placed the food on his plate), he can dress himself with t-shirts & elactic waist band pants independently, and he needs minimal assistance with button-up shirts and pants with belts or fasteners. He can also put his shoes and socks on, independently. His parents claim that he can brush his teeth on his own (though Mom always brushes his teeth after him), and can wash / bath himself. He is toilet trained and can independently use the bathroom. Supposedly, he also knows how to operate the TV remote and can surf his favorite channels. He can also entertain himself on an IPAD.

What he cannot do is talk. Or understand fluent language. Or read or write. Since he has good self help skills, the family insisted on academic goals on his IEP but they say there is little to no progress academically. He can identify some numbers, alphabets and shapes, but that is it.

On the other hand, he is fairly easy to manage, behavior-wise, and seems a happy kid. He can swim, so he is safe around bodies of water for a short period of time. The few scares they had when he wandered away, he did eventually get back home on his own (but not before an alarm was raised, and one time, the cops were involved). During doctor's visits, he is able to point to where he is hurting, so the problem they really have involve vision / hearing tests (he has a slight hearing loss in one ear).

I am not trying to box someone else's child into one of the categories, but for my own information, am interested in knowing if this kid would be considered moderate or severe.


I think there is a distinction between language and communication that gets lost. It sounds like he does have at least rudimentary communication skills. He may not speak and may not be literate, but he communicates and understands in his own way. Whether they put him in the moderate or the severe box, I don't know. Aside from communication there is the repetitive motion/ rigidity criteria. In addition, you can make substantial progress and not move up the levels b/c it is generally compared to age-based expectations, and these expectations grow over time as well.

I also do not know what constitutes "functional.' There is basic skill functional like you describe this boy as having and then there are social functioning skills. It is not all about verbal or reading abilities and adaptive skills. Adaptive skills would figure into functionality but it is not central to an actual autism diagnosis. The main parts are langage/communication (Both basic and social) and rigidity/repetitive motions.

The social component is very important to an autism diagnosis. I would assume functional includes all the grade-level functional skills that they keep track of. That is why I don't know where we are, either, because if you take into account grade-level skills: emotional, social and adaptive, we are substantially behind. They did not offer much support, so I think they were intentionally treating our son as being less severe than he is in actuality based on the "support" label for each level. So basically I am no help b/c I don't know what they count, and I don't know that it matters what psychologists label it other than for qualifying kids for services. I know you are curious, though.

Edited for literacy and typos as per usual.



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12 May 2014, 8:33 am

I don't have much to add other than to say it has become very clear to me that these labels change over time, and by that I do not mean the improvement/changes that can be see over time in individuals, but rather I mean that offering the diagnosis and the labels have changed over time. What would be HFA today I believe wouldn't have been HFA 15 or even 10 years ago and what would have been ignored is now included in HFA (which is level 1)? If that makes sense... For example someone who is moderate today would have been referred to has high functioning 20 or 30 years ago, and someone who is HFA today probably would have slipped through the cracks 10 or 20 years ago?



Last edited by Dadenstein on 12 May 2014, 8:56 am, edited 1 time in total.

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12 May 2014, 8:44 am

InThisTogether wrote:
Don't know if I can add anything. "Moderate" is where my daughter started and "high functioning" is where she is now. It is hard for me to account for the major differences because she was also 2 when she was "moderate" and is 8 now, so some of it is natural maturation, but I will try to share with you the general "feel" I have regarding how she has changed. For me, it is not just simply a matter of change in language skills.

It is more a change in...how to explain...even for awhile after she started gaining language skills, she had to be prompted for almost everything. I had to keep a close eye on her because she had a high potential for wandering or escaping, but I don't think it was necessarily intentional on her part, it was either due to sensory reactions or being lost in her own imagination. She was more quick to retreat into herself. She actually would become so disconnected when overwhelmed that she would sometimes fall asleep wherever she was...the playground, the classroom, wherever. She often did not respond to her name or to anything around her.

As she became "higher functioning," she became less prompt dependent and more...in this world...though that's not exactly what I mean to say. For example, when she was more "moderate" if she saw a butterfly, she would become completely absorbed and I swear she would have wandered a mile away chasing it before she became aware that she no longer knew where she was. Now that she is "higher functioning" she is much more aware of her surroundings. She might still see a butterfly and want to follow it, but she will only do it while she can still see where I am or while she still knows where she is.

When she was more "moderate" she seemed more quick to lose her connection to the rest of the world. A perfect example was one time when I dropped her off at the first day of summer camp (the summer before kindergarten), I "left" but really stayed behind to watch her from where she couldn't see me. She had been at the camp in previous years and I knew she was no longer going to have support in kindergarten so I wanted to see how she would function. She had a 1:1 at camp still, but she wasn't there yet, so I thought it would help me see both how she was going to handle things and also how the staff was going to handle her.

Anyway, the teacher said "it's carpet time!" And all the other kids started running to the front of the room where the carpet was. She froze. Her whole classroom in school was carpeted, so she had no idea what the teacher meant. She did not notice the other kids going in the other direction or look for anyone to help her. She just stopped. Like a statue. Withdrawn into herself as she was overstimulated and did not understand the expectations (I wanted so badly to go and help her!) After all of the kids sat down (less stimulation and commotion), she was able to "come out of herself" enough to realize the other kids were on the other end of the room. So she walked over there and spied the tiniest space in the carpet to sit on. She stepped her foot into it, realized there was not enough room to sit. Stepped out. Stared at the space. Stepped back in. Stepped out. Started to flap. Stared at the space. Pranced. Flapped. Stepped in. Flapped. Stared. Stepped out. By this time, everyone was saying "there's more room in the front" but she could not even hear them because she was so focused on the one solution she thought she saw. It wasn't until someone physically touched her and pointed to the other spot in front that she was able to get there. At this point, I would have considered her somewhere in the "moderate to high functioning" area of the spectrum. When she was just "moderate" this whole thing would have caused a meltdown. At this time, her verbal skills were also on par with her peers, so that is why I think it is more than simple verbal abilities.

Now that she is "high functioning" she still has issues with situations in which she does not have a ready-made script to follow or when what she expects to happen does not happen (she cannot always think and problem-solve flexibly in real-time), but more often than not, it results in a delayed reaction or response, but after a few moments, she is able to "look to see what your peers are doing" (which is what we taught her to do--reference peers) and then she will proceed, albeit delayed.

I don't know if this adds clarity or makes things more confusing. And I do want to remind you that I have two friends who's kid/grandkid did not speak until 5, and they are both doing very well now. There is no magic age (I know you know these things...but I also bet you hear plenty of negative things IRL, so I want to counterbalance it).


I really appreciate your descriptions here in that they are very clear.