Opportunity for Parents of Non-Verbal Children with Autism to Connect, Share, Advocate

Hello again Ms. Rudy. Each parent can speak for themself but as the father of a low functioning boy with classic Autism Disorder I use the expression “low functioning” regularly to summarize his deficits. It is an objective, accurate and neutral term. To pretend that he is not low functioning would be to hide the truth and do him a disservice.

Thanks again for the balanced approach you employ in presenting these often sensitive issues.

Conor’s dad.

Nomenclature, is often a touchy subject when talking about autism. People have very strong views about terminology which sometimes interferes with our ability to communicate. I certainly don’t think that it is unimportant, but when it impairs our ability to have an open discussion, then that is unfortunate.
Best wishes
http://whitterer-autism.blogspot.com

I don’t have a problem with the term low-functioning because it is so obvious that my son is not able to function like the majority of kids his age — or less than half his age. I don’t see the point in pretending that the level of his disability is less than it is.

I think it’s time that somebody address the communication issues that seriously affect kids and adults with “low functioning” autism. We hear all the time about kids who are just socially odd, but rarely about the kids who struggle to communicate in the most basic ways. My son is a smart kid, he just struggles with getting what’s on the inside, out in a way others can understand. I applaud a forum for parents with children who require SO MUCH general assistance to communicate!

I think we are talking about two different issues here: low communication and low functioning. They are not one in the same. My son has difficulty expressively communicating (written or voice), but can do many day to day living activities. It may not bother others but I feel when “low functioning” is used, it often means others do not beleive he is capible of learning. That is just not true. I am only speaking of my child. … he functions differently, but is not low functioning. He has difficultly communicating but with the right approach, he is capable of much.

I think when the term lower functioning is used in the educational setting,the person with autism is not challenged enough because they have that title.

I agree some people get confused with low communication ability and low functioning. Some people with autism have little speech, like Rhonda’s son, but have the ability to understand much and perform day to day living activities.

My son, on the other hand, has both problems — because he also has mental retardation. He struggles to communicate, has low muscle tone in his mouth, and has lots of trouble with day to day living activities. It isn’t just that he has trouble communicating, he has serious cognitive and motor deficits.

Portia Iverson will be speaking this Saturday (April 7) at Beacon Day School in Orange, CA at 11:30 a.m. for free. Go to http://www.beacondayschool.net/ for more information.

My 5 year old grand daughter is autistic. She communicates by pointing. I know that my son and her mother have a hard time trying to educate her. I would like to know of other resources that may help them… she now attends regular public school, and is repeating pre-kindergarten.

thanks so much for the chance to share openly about low functioning autism. my son is absolutely a beautiful person who happens to be unable to speak and has extremely limited communication skills. thankfully he does understand the great love that his sister and i have for him and the love and dedication of his home health aides and therapists. i just over heard a well meaning person asking my daughter if her brother has ever said anything at all….this person has also frequently asked me if my son will ever talk. i almost feel badly for the people i meet who seem uncomfortable and almost in a state of disbelief about how low functioning my son is…. i try to remember to be very grateful for all that he can do and that he is able to go many places and share many experiences with me and his sister. i hope that your website will help to increase the public awareness of how truly wonderful people these lower functioning children are and the great beauty that they can bring into the lives of all who let them.

Hello-
I use the term ‘low-communicating’ to describe children and people with autism who are low-functioning behaviorally, but have normal cognitive abilities and who have often developed internal langauge that they are unable to express (yet). This includes nonverbal individuals as well as those who can speak but cannot use their speech to communicate.

I am very excited to report that in the past 30 hours or so, since Lisa Jo Rudy posted about the Strange Son Community on About.com, 30 families have signed up to join!

We are a new online social network that connects people who have a family member or works with someone on the more severely effected end of the autism spectrum (nonverbal or low-communicating). As our children grow older and may not seem to respond to many interventions we may understandably feel increasingly discouraged and isolated. We need and deserve a safe, supportive and most of all a hopeful community forum where we can help each other and learn from one another. The new Strange Son online community is a place to share therapeutic strategies and resources, to ask for help and tell our stories. It is a community where hope remains alive and well for our families.

I believe that many low-communicating and nonverbal people with autism have far greater cognitive ability and potential than is generally recognized. My own son Dov, who is nonverbal, did not communicate until he was nine years old.

So I’d like to invite you to become a part of our ‘grassroots’ movement to help non-verbal and “low-communicating” people and children with autism to communicate better, get a better education and have a higher quality life. As a member of the Strange Son Community you can upload your videos and photos, exchange information on the Community Forum and share your experience on your personal Blog.

Go to http://www.strangeson.com to join the Community now!

Best wishes from Portia Iversen
(Strange Son Community founder and author of the book Strange Son)

I do have a problem with “low functioning” terminalogy and I think many of us parens don’t realize the diservice we do to our kids when we use it to refer to them as such. Low functioning has the conotation of low cognition. It has become so clear that past stereotype for people with autism was that 75% of them, had low congnition/ mental retardation because many of them were not able to speak or communicate and express their ideas and because they had many physical symptoms of autism, so on the outside, they appear to have low cognition.

As the author herself explained it, she too probably thought the same of her son before he learned to communicate using RPM and found out her son had normal intelligence. The Rapid Prompting Method that Soma used with him gave him a voice and allowed his intelligence to shine through.

I think we need to eradicate that term from our vocabulary because truly, for those kids who are not verbal, non of us know for sure how much they really know.

It’s just been a terrible stereotype of autism to think that low cognition is part of autism. IT ISN’T. Now, it is known that 75% our our kids have been found to be of normal or even higher intelligence. Even the medical books describe autism as having an impact in speech and socialization, it doesn’t say cognition.

I think we need to stop perpetuating and feeding the stereotype of low functioning = low cognition.
That’s not even based on fact and has a direct inpact on how our children are viewed and treated.

Limited verbal speech or nonverbal, I feel is the more appropriate term.

I agree,I think the term needs to be “deleted” from anyone’s reference to an autistic or any other challenged individual. It puts them in harms way and there is a difference as to how people,teachers,therapists and others receive our children and treat them with either little or no respect as a human being.

So yes,it does make a difference..it’s not about being politically correct either,it’s about the dignity and respect that tends to be forgotten when some “low educated” individuals attempt to “label” or categorize ones mental,physical,and psychological being. “Functioning” levels vary with most autistics,just as they do for neuro typical people. Their level of functioning can vary from moment to moment or day to day.It depends on so many things such as having the ability to integrate their senses.

There are some people like Teachers,paraprofessionals ,writers/authors ,for example,who think that it’s “ok” to speak of or write about Autistics with very little concideration of how these words or labels can be devastating.

Still, there are people with autism who do have low cognitive ability — my son is one of them. He talks in simple sentences, and there are many ways to test his understanding and cognition, and he has definitely had enough brain damage or lack of development in his brain accounting for this. And, there are many people with Down’s Syndrome wh have both cognitive disabilities of varying levels and autism. Just as it wasn’t accurate to say most people with autism had mental retardation, it’s not accurate to say that people with autism seldom have mental retardation. There is more people autism and with mental retardation than in general public.

Oops — delete that last sentence — what I meant to say is that there are still a significant number of people with both autism and mental retardation.

I used to use the term low functioning until I realized how very disrespectful it was to my son.
Yup his functioning is really low in some areas but we discovered that he is an incredibale artist (at the age of 19 no less) and he also is HF in other areas like helping around the house…hey he does better than his big sister at this!
When discussing my son and how he functions I usually say that in many ways he is “more challenged by his autism.” I think that this a better way to talk about what is going on because autism is WHAT causes the challenges in his life!

Cynthia,

In reply to your comment, I don’t think I said all people with autism couldn’t have mental retardation as well, I said 75% of our kids don’t.

Having said that, I would like to know how some of these kids are given such a diagnosis of mental retardation? Is it because they can’t speak and can’t say verbally what they know? They can’t perform tests that measures their IQ Or be able to say or show their intelligence when they are asked a verbal question and have no way of answering back?

Of course, there are people with autism who can have metal retardation as well but they % of that is on the low end.

If there was actual physical trauma that hurt a part of the brain, then yeah, of course, it would make it more likely that people can also have mental retardation.

My point was referred to the population that has not had physical trauma to the brain or any other type of physical problems with the brain.

My point is that there are so many people with autism, who are non-verbal or limited expressive language that are categorized as having low congnition because they are doing much lower academic work and can’t seem to reply to more complex questions or have in depth conversations (verbal) For this population, that doesn’t have physical impairment of the brain, this is the group I’m speaking about.

My son is 12 and he has limited speech, he can talk in 1, 3, 4 words sentences, can comment on things and verbally answer to simple questions. Yet, he’s been doing first grade work at school. He’s never been categorized as having mental retardation ( I would have never allowed it) and I knew he knew so much more and that he was capable of so much more but didn’t have a way to show it.

So, In Feb. we went to the HALO clinic which is were Soma works now. (Soma taught Dov, Portia’s son how to communicate and learn) and to make a long story short, my son knew a lot more than I gave him credit for. I found out he has the capability of learning much higher subjects and I didn’t need to teach it over and over again.

We’ve been working at home ever since and we’ve covered topics like history, geography, reading comprehension, spelling. I always knew he was a sight reader but I never knew how many words he really was able spell and read.

This method (RPM) has really giving him a tool he can use now, it’s so simple and low tech, all you need is paper and pencil.

My point really is that having a negative conotation of “low functioning” really does a disservice to our kids and affects their self-steem. Teachers and so called “experts” only look at what’s on the outside and what they are not doing. We’ll perhaps if they had a better tool like RPM, then they would be able to find out how much they really know, hear, learn all on their own. I think it’s pretty incredible. My son can navagate thru “youtube.com” (his favorite website right now)better than I could. He’s been exposed to the computer since he was 4 and that’s one of the things that made me wonder just how much he really knew. He can log on to the web, go to his sites, (he scrolls down the search box and finds his website – I didn’t teach him that, but he’s seen me do it) RPM has really reinforced my intuition that he really is capable of such more more – there just wasn’t a tool that fit his need to showcase it, till now.

We need to re-coin the phrase and empahize that low functioning has more to do with their ability to physically function on a daily basis given their sensory issues, stems, and even at that, some days they can cope better physically and others they need more support. That’s true of many disabilities and even with regular people. We all have quirks, we all have sensory issues, they are just not as evident as they are in the autism community. I commend the view for making that distinction on their show today. Clearly said that autism is NOT like mental retardation, does not affect cognition. It affects language and social development, those are the hallmark areas of developement that are affected. This of course doesn’t imply that no child with autism can’t have mental retardation, but generally speaking, they don’t go together.

Ivonne

By the way, if anyone is interested in finding more about Soma and RPM, you can visit http://www.soma-halo.org.

Also, several of us parents are bringing Soma out to CA in August to work with our children but there is an opportunity to view Soma and RPM by registering to observe her teachings and there will be 15 min. Q & A sessions through out the three days. It will be August 9-11, 2007 in Irvine,CA. If anyone is interested, you can email me and I can give you further details. ivonne@msn.com.

My son has very severe apraxia of speech (unintelligible speech) and autistic features. Now that he is seven years old and has been doing some of the rapid prompting method (go to http://www.halo-soma.org) and isolating his finger to point receptively to spell words, identify words, numbers, concepts, etc. – wow we see that his cognition is so much higher than once believed. He’s doing some appropriate grade level academics. He is still delayed in social, emotional, fine and gross motor skills. Many, if not most, of our children have major motor planning control issues, attentional deficits, severe sensory disturbances etc. that have a huge impact on their day to day functioning. My son stims, has tantrums (mostly because he’s misunderstood or just wants his way like typical kids) but really does understand quite a lot of language. He had an ABA program early on which helped somewhat but we use it much less now. When his sensory system is on overload, his brain shuts off just to cope in the moment. I do not know how well my son will ever speak some day, but I am darn sure that through much work and people who believe in him, he may just type (even with one finger if so be it)out whole thoughts, be integrated with typical peers (even if in highschool or beyond). We will always work with him on behaviors and self help skills so he can become more independent. For now, we love him as he is and strive to help him reach his potential. I do not believe he can be “cured” but perhaps some of his symptoms alleviated so he can cope better in our world. He is unique and yes different. Life will always be challenging. I agree that low functioning should not always be assumed to be mentally retarded. The guy that they based the Rain Man movie off of, Ken Peeks I think, is very smart, yet socially deficient and cannot even dress himself because he claims that he cannot get his body to move. Amanda Baggs featured on You Tube cannot speak a word, stims, slaps her head and appears low functioning but types whole thoughts extensively.

I have an 8 year old son and rather than refer to him as low functioning I would say he is servely Autistic. He is completly non verbal, since 18 months old has never said a word, but he has great receptive language and understands what you say to him, thus causing much frustration and challenging behaviour. He knows he should not headbang hit scratch and bite, but once the overload sets in and the frustration mounts, he can not help himself as he does not have speech to help him to get his message across. I know he can learn and we have just discoverd he can recognise words and has some reading skills, does anyone know of anywhere there is information on teaching reading to non verbal children? so we can develop this skill further.
Some one once said to me that it is the smart children who display challenging behaviours, as they are aware of what is going on around them and want to be part of it, just not always sure how, and with limited or no speech just can not.

I am a grandmother of a “low functioning” 11 year old girl with autism. She is not potty trained, is non-verbal, but understands what we are telling her. She does not point, has to be helped with dressing. Any comunication devices that have been tried with her at school and at home are not effective and apparently the symbolism is alien to her. She aso suffers from seizures and until recently asthma has been a problem for her. She has no way of indicating when something is bothering her either physicaly or mentally. It is almost a matter of trying to read her mind. Oh she also has some form of CP. When she is happy, the the world is a brighter place. She a very loving and beautiful child and I think I would be lost without her. I am the person that is most responsible for her care as her mom and 2 other sons live with me. At times it almost breaks my heart tht I can not do more to help her. She is very loved by the school staff that works with her. She is low functioning in so many areas that the title doesn’t really offend this family. Her brothers are very loving toward her and when she is out in the community it is hard for peole to believe that she is autistic because of the stereotype images that they have heardand seen. Most children only ask why she doesn’t talk because she is “beautiful” only children could come up; with that relationship.

My son John is 8 yrs old. He is non-verbal,still not potty trained, and uses his PECS book inconsistently. He is a runner. He has no awareness of danger and that frightens me. He is a sweet and lovable boy who hugs and kisses his family. I long for a way to help him communicate better.

I have written some articles specific to the nonverbal population. I have worked with these fascinating individuals and they have broadened my conception of consciousness. For a unique perspective, please check them out!

Please feel free to ask questions or comment.

http://ezinearticles.com/?expert=Mary_Ann_Harrington

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