"High-functioning" ASD can't speak for "low-f

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I accept both your points are also valid.

I disagree as well. Cyberdad both your points make sense, to the extent that understanding and motivation are there. And for yourself may be totally valid.

Much of the world lacks adequate understanding of autistic / Aspie theory of mind and are not terribly motivated to understand.

That said, I agree with your points when it comes to young children. Just don't think one should generalize that to say adults remain less capable of advocating.

Though it may take more from us doing so.

I think that hfa adults advocating for any kind of autistic child depends on working with the parents and child over time to learn about them and be able to speak accurately about the child. Advocating for someone else from afar or autistic children in general or lfa children in general is not good, and most of the attempts that I have seen of that seem inaccurate, and often the adult defaults to talking about themselves when the focus should be on the child.

I think in an ideal world articulate and informed autistic people would be the best advocates for other autistic people.

However we don't live in such a world. Quite clearly the NTs who currently advocate for autistic people in large organisational jurisdictions as well as grass roots parent based organisations believe they are doing the best job they can under the circumstances. Advocating for young children (particularly non-verbal ones) remains the domain of mostly NT parents (despite the good intentions of some here on WP).

What is clearly lacking is addressing the individual and various needs of adults with autism. Here independent and like minded adults with HFA or Aspergers need to perhaps band together and start organizing themselves.
Step 1 - online agreement on what issues and people you want to represent
Step 2 - agreeing online to a set of principles
Step 3 - agreeing to meet face to face
Step 4 - joining a larger network of like minded autistic people
Step 5 - as a united front approaching funding bodies and/or politicians to make change in areas such as support, education, counselling etc...

Just two thoughts

- I have an instinctive feeling that Autistics should stick together and on many levels not differentiate. So I tend to think in terms of us and speak that way, of one single group. As far as working towards getting a fair deal in society, there is power in numbers.

- I do know that there are many autistic aspects I do not personally experience and if I tried to talk about them, it would be basically talking out my a$$.

But I do generalize a lot anyway, not liking the high and low designators and being a proponent of autistic is autistic. I also feel those who can communicate effectively should use that to assist those who struggle with it. Whatever your strength is, use it.

I can only definitely speak for myself. But sometimes I tell people, " I feel this way or that way and sometimes I act this way or that way because of this or that so it is possible that the other person might be having a similar experience as mine." That way it gives people something to consider but I always make sure they understand that I am speaking from my own experience so just because I feel or do something does not necessarily mean that that is the experience of someone else. But sometimes it could be so at least it's something to think about.

That's how I feel too. My parents and siblings don't really get it. My brothers have made great efforts to understand me since I found out that I am on the Spectrum and as much as they understand many things about me now and as much as I appreciate their efforts, they will never truly get it because there are certain things they simply cannot conceptualize at all and they have no frame of reference for these things. Something like sensory looping for example, there is no way that they can possibly understand what that is like no matter how many times I explain it. They also have no ability to understand how I can be so affected by sensory input. They try to be sensitive to me as much as they can but they can't really understand. They also can't understand what it's like to have a dual personality where one half of you is still a true very young child and what that is like to be constantly balancing in these two worlds. They will never be able to understand how fingers and feet burn by touching certain textures. They cannot understand the huge emotional onslaughts and not being able to process them to the point of meltdown. There are many things that no matter how much they love me or how much they try to know me, they simply cannot understand. I think that these are among the types of things that you must experience to really get. You can certainly know about them but unless you have experienced them first hand you really can't fully get it.

I'm moderate classic and let's put it this way....there's been a lot of times I've needed people here to help me explain my certain situations better then I could come up with. as long as someone has a good understanding of autism, it makes no dif to me if they are lfa or hfa or whatever between. don't see why it should. Same goes for an nt. if they understand, they understand. that's all that matters to me.

Probably the best expert on earth about my autism and explaining me, is my same age nt cousin i grew up with. he used to translate for me when I was little and completely nonverbal. tell my parents what I needed and what to do etc. he's always been amazing at that.

I guess there is a big difference in helping people understand what you might need if you need help and in helping people understand what you might actually be feeling at any given time. A lot of times my oldest brother knows what I need even though he is NT. Sometimes he knows exactly what to do for me to help me even if I can't ask or explain what I need. But he can't always understand or relate to what I feel since he has never felt anything like it before. And other times he actually can relate to what I feel and at those times he tells me that am not that different from everyone else as far as what I actually feel or struggle with. It's just that I feel or struggle with it much more intensely and much more frequently. So if I needed an advocate he would probably be the best NT. My Husband would be good too but there are a few things about me that my brother understands better than my husband. But I have found that those of you here who are actually on the Spectrum whether LFA or HFA actually understand the things I feel perfectly from actual first hand experience.

Although I agree that, in most circumstance (with the possible exception of close family/friends in specific situations) a person should not speak for another person who has a more intense manifestation of AS, perhaps it is a good idea to give the NT some basic advice on how to reach out and communicate with the other person and let them know to expect a different reaction from a person with AS than from NT people. It is important to remember that while we can't predict what anyone else is thinking, most NT's probably have an even harder time understanding people with Autism or Aspergers Syndrome than other people who have it.

It?s not just the autism field that is defined by guesswork, though; in any helping profession where you are dealing with human beings directly, there is some amount of guesswork involved. You can?t just assume that something will work. Sometimes you can ask, but some people just don?t have the right amount of self-insight to be able to say what will work for them and what will not, so that?s when you do need to make a guess, try, and see if an approach works. Making educated guesses increases the efficiency because it improves the chances that your chosen approach will work, otherwise you?re running the risk of randomly picking the most ineffective approaches. Each person, with or without autism, is unique, so in terms of ASD, I guarantee you that we will never find a ?magic algorithm? that will work for everybody.

***

I?m still reading the rest of the responses and am agreeing with most of what has been said so far. I think efforts to engage do not equal an understanding. The person with ASD might not be capable of interacting with/engaging with another person with ASD who is different from themselves, perhaps as a result of a lack of previous exposure to people like that, a lack of maturity (and thus knowledge of how her own ASD affects her).

I agree that it?s a largely childhood thing and we do learn a lot about ourselves and others as we mature and gain experience, whether we have ASD or not. Even an adult who might not be able to engage someone else with ASD for whatever reason (maybe novelty? Anxiety?) may still understand that person on an instinctual level, I think.

That said, so far, I feel like parents of children with ASD are the only NTs who often do truly understand people on the spectrum, because of their extensive and dedicated experience with the child (perhaps certain personality dispositions are needed for that, though, because I've seen parents who are struggling to understand their children with ASD, as well). The siblings I've encountered in my professional & personal experiences, for the most part, were not understanding and were largely preoccupied with their own lives. Professionals? Somewhat rarely, because they do not tend to engage with people with ASD outside of their work hours & are often in it for the money or other social status-related motivations.

EDIT: The responses about siblings are really interesting.

True. I wasn't aware that's what people were doing and maybe that's what makes parent advocates so angry. I guess I'm acting sort of as an interpreter for when other people are confused by the actions of individuals I work with.

that is an interesting perspective though differs a little from mine as a non profesional.
have found from personal experience that am judged more negatively by NT parents of younger autistic children/teens as they do not understand how someone with LFA can use a computer/ internet let alone be at peace with life and autism, have always found NTs who havent had any direct/ indirect experience of autism are like a blank slate and dont have these stereotypic expectations built up in their mind though they may have very basic understanding of autism from films and tv.

with siblings,always experienced that with sister,was even despised and resented by her because of the way had affected family life.
she tries to understand now and is more like a friend but even though she is in her thirties theres still times when she has blown up in anger because she lacks the tolerance and open mind needed to cope with someone who is severely autistic.

as for profesionals,all of mine are like family- they all belong to the same team;the NHS/social services intelectual disability team and have known almost all of them for many years including the pyschologist, they do genuinely care and am always being asked about by them if they hadnt visited recently,they also know mum and dad very well so it is like a family in many ways.

I'm a high functioning autistic and my mother spoke for me all the time when I was a child. For instance someone would ask me how old I was I would just stand there and never could answer there question fast enough. My mom would answer for me. Also, when they would ask me why I did not answer them my mom would tell them that I was tired or that I was shy. Neither one of her answers was true. I was not tired and the reason I was not speaking was not because I was shy. I just could not pull the information up fast enough to answer the question. So! I do not think someone should speak on someone behalf because it is not possible to know what someone else is thinking.

As a parent of a child who is on the severe end of the spectrum, what upsets me the most about those who seek to speak for my child is that, more often than not, the "speaking" involves sweeping generalizations and broad strokes of the brush. Every person is an individual, and one cannot "speak" for another person - and that includes parents like me who try to "speak" for my non-verbal son. Guesswork is different from "speaking with certainly", and the alleged "certainty" annoys the heck out of me, for sure, but that isn't what you are seeking to do, are you ?

That said, some of the best - the very best - advise / feedback I have got regarding my son have come from adults on the spectrum, especially a couple of them right here on this forum. I joined this forum back in 2012 when I was going through HELL. I had lurked here for almost a year prior, reading a lot of threads on the parent forum, but did not sign up myself until 2012 when the crap finally hit the ceiling at full force. I was severely depressed because I was told that my son was not autistic but "intellectually disabled" (aka mentally ret*d).

One of the first people to reach out to me on WP is an adult on the spectrum who held my hand, guided me through the advocacy process, helped me realize that the district's goals for him were a lot of rubbish, and helped me help my son. I will be eternally grateful to this person (you know who you are ! !!) and I *still* get help from them from time-to-time although we don't talk as much as we used to ! This person also gave me huge shots of hope as they themselves were a late talker, helped me understand language development in individuals with autism, and stressed to me the importance of critical pre-requisite skills that needed to be in place, before any meaningful language could develop in a severely afflicted child. It really cleared my head and shifted my focus from communication to even more basic, core skills ! Thanks to this person's help, I was able to aggressively advocate for my son, and even pulled him out of the district when I realized - with this individual's guidance - that my son was being set up to fail by the school personnel.

Never once, however, did this person attempt to "speak for my son" or tell me that "this is how I gained language and this is how your son will gain language" etc. Instead, they gave me information, and advise on next steps, without trying to tell me what to do. I find it ironical that someone who was once considered to be on the lower end of the spectrum was actually so astute, so sensitive and spot on with so many things that even I had missed -- all without *ever* meeting my son.

So, yes, I will *absolutely* welcome help / feedback / advise / opinion from adults with autism, regardless of their level of functioning, but what I don't want is someone telling me that they know my son best simply because they happen to share the spectrum with him, KWIM ?

I will take this opportunity again to thank you, my first friend on this forum. Will be ever grateful to you - and lucky parents who will get to know you in person, and have you to help them advocate for their kids in real life ! !! !

Last edited by HisMom on 16 Jul 2014, 3:42 am, edited 2 times in total.

Hi Hismom,

I also have a child on the "not so fashionable" end of the spectrum. Could you kindly share with parents like myself what important critical prerequisite skills that children like ours need to have before meaningful language can take place?

This is the type of information that $200/hr psychologists are unable to provide me.

Thanks

Hi CD,

Sure. This is what I was advised to focus on to help with his language development.

1. Cognitive development : This includes play skills, symbol recognition & usage, concept of cause and effect, pattern recognition & execution, problem solving and imitation.

2. RECEPTIVE LANGUAGE : I was whining to this person one day about how my son wasn't saying a word, when they asked me if he understood everything I said to him ? DUH. Enough said.

3. Non-verbal communication : Long before a child talks, s/he communicates non-verbally via gestures, such as pointing, bringing things to people for help etc. It is almost impossible for a non-verbal child to develop spoken language prior to the cognition of and usage of non-verbal / gestural communication.

3. Social awareness, social "sharing" and joint attention : The child does not need to be overly friendly or a social animal, but s/he definitely has to be interested in / curious about the environment around them, be aware of the people around them, be able to spontaneously imitate / copy other people, and be able to have basic interactions with them (turn taking is a critical interaction that language impaired children are heavily deficient in, and I was advised to work intensively on his turn taking skills). The child should also "share" their world with the people around them - for example, bringing an object to "show" to the parent as opposed to bringing it to them to simply ask for help with it. Joint attention skills such as looking where the communication partner is looking, being able to follow another's pointing, being able to interpret another person's non-verbal communication (such as facial expression etc) are basic pre-reqs to more advanced communication skills.

My son - two years later - still does not say a word, but his receptive language skills are much better now, he can also engage with other people, and his imitation skills are getting better, too. He can do simple puzzles and can communicate basic needs. He is still severely affected but baby steps. Plus, of course, I feel more confident that I am actually helping his language development by working on skills IN THE RIGHT ORDER.

Back in 2012, we actually had an IEP goal that said that he would respond to the question "where is the x ?" where X is a specific object (ball, bat, spoon, cup etc) when my son wasn't even pointing at the time ! Yeah, real smart, the school PSYCHO-logist was and such as ass she continued to be that I eventually pulled him out and began to work on shoring up his foundations, first. For kids who are on the severe end, working on these pre-reqs assumes dire importance. I began to panic when he wasn't talking by age 3 and my focus was solely on speech development. I was completely blind-sided to all of the other skills he was missing in the first place -- the core, critical pre-reqs on which foundation the entire structure of complex language is built. I would have continued to be blind-sided to these things had my friend not given me a major heads-up and a rude awakening of sorts !

But better late than never.

You may now send me a payment for USD $100 as my consultation fees ! I accept credit, debit, old fashioned checks or new-fashioned PayPal !

Last edited by HisMom on 16 Jul 2014, 2:48 am, edited 2 times in total.