Non-speaking, “low-functioning”

I am autistic, non-speaking. I am also labeled “low-functioning”. This label is a pre-judgment based on what I cannot do. It makes people look at me with pity instead of trying to get to know me, listen to my ideas.

I am a self-advocate and I can type my thoughts. But, at the moment I show up with my communication device and an aide, my credibility, in the eyes of most neurotypical people, is diminished.

This is a constant battle for non-speaking autistic. Even the ones among us who have demonstrated, many times, their capabilities, and who have succeeded despite all the hurdles a disability imposes, these successful cases don’t seem to be enough to end the myths: that non-speaking autistic cannot self-advocate; that the so-called “low-functioning” cannot think by themselves, cannot have ideas or opinions.

We can, and we do. We keep moving forward despite the many labels we are given because it is assumed we need others to speak for us, to decide for us. Labels like: “low-functioning”, “severe”, “mentally retarded”, “needy”, “incompetent”. They all show how the neurotypical world sees someone like me. Someone who looks “more different”, acts “more different”, needs more help with things pre-determined, by the neurotypical, as simple tasks.

Looking very disabled or needing more physical help does not make us unable to think, being critical, being able to analyze.

There are too many neurotypical “experts” claiming to know more about us than ourselves. They say they can make us “better”, as if we are “not-right” or “wrong”. Most of them never thought about asking us what could make our lives more productive, less anxious; or try to understand a non-speaking autistic who has not yet found a way to communicate. All the conversation has been about “fixing” us, with the expectation that we finally look and act “more normal”.

Autism is a big spectrum. Some of us have better cognitive function; some of us might have intellectual disabilities; some take medication; most, if not all, have sensory issues. The ones labeled “low-functioning” need aides for everyday tasks.

For example: What does it mean if I don’t pick the right shape when asked? For the “experts”, it probably means that I am, in their words, “mentally retarded”. It is, in reality, more complex than that. It could be that my mind is obsessing over something else; it could be that I had a seizure or that the anti-seizure medication is making me extra drowsy; it could be that I believe I deserve a better treatment, since I am an adult and I am past childish tests. Even if I am indeed intellectually disabled, the fact that my opinion is being ignored remains.

Non-speaking autistics that fail to make eye contact, and that can’t say, or are never asked, why they can’t, also receive the “low functioning” label.

Forcing someone to make eye contact or insisting on assessments more appropriate for a child – with the inevitable “good job!” – are nothing more than a training program, a useless one. It causes more anxiety and does nothing to improve our self-esteem.

All the labels given to us only help to make myths seem like the reality. By classifying non-speaking autistic as low-functioning, one is lowering expectations for the autistic individual. He or she is not given a chance to express him/herself and maybe show hidden abilities.

We, autistic, have tried hard and accepted the neurotypical way of doing things to make it easier for non-autistic people to understand us, interact with us. Despite some progress there is still very little reciprocity. This is even more evident when the autistic person is one of the so-called “low functioning”. There is little patience in listening to us. When one of us succeeds, he or she is considered an extraordinary exception.

Look around. There are many of us trying to be heard. We did not put the “low” in “low-functioning” and we are speaking out. It is also up to the non-autistic to reciprocate in this communication exercise.

Amy Sequenzia’s Non–speaking, “low-functioning” is published here by permission.

[image via Flickr/Creative Commons]

related: The Iceberg Speaks


on 01/11/12 in Autism, featured | 61 Comments | Read More



Comments (61)

 

  1. Chris Gillespie says:

    fantastic article! at my 6 year old sons IEP recently i was struck by the realization that the tests he was doing so poorly at might be far more of a case where “he is not in the least bit interested in what you are going on about”

    very well articulated. i intend to pass this around.

  2. Amy Knox says:

    Oh, I would desperately love to have a conversation with someone like you! My non – verbal 13 year old is labeled as low functioning and mentally challenged but he is NOT!!!! He has so much going on upstairs and I am desperate to know what people with your condition think or feel.

  3. ictus75 says:

    A great article. When will people ever stop measuring Autistic people by outmoded tests that attempt to put everybody into the same, small box? As a person with Aspergers, I find so many of those tests have no relation to me and who/what I am. Often I just refuse to answer things because they aren’t relevant. Just because I refuse to ‘play the game’ doesn’t mean I’m ‘retarded’ or stupid.

  4. John Makin says:

    This brings to mind those from previous times that were avid letter writers …

  5. AllyMack says:

    Thank you and thank you again! I salute you. I want to meet you. Help is needed! How do spread this word?

  6. Amy Sequenzia says:

    Thanks for the comments. I am very tired today. Will try to respond later

  7. Kelley Peart says:

    Interesting and good read. Thank you! I am left wondering, as always, how you *initially* bridge the gap between a non-speaking person and a speaking person. How do they learn to communicate to begin with? How do you teach them? Without speaking, how do they learn to read and write? It makes me think of “Team Hoyt” (http://en.wikipedia.org/wiki/Team_Hoyt). They weren’t sure the son could communicate until he was 11, when they got special equipment for a computer… and the first thing he typed was “Go Bruins!” He could type out full sentences the first time, and explained his love of sports to his dad! HOW did he achieve this? I so desperately want to know this so I can be looking for signs of this possibility in my (almost) 5 year old with cerebral palsy… who only communicates by smiling, laughing, screaming, or crying. I want to find (or make) that bridge to better communication and a better understanding. I also just want to know what he wants for lunch!

    If you don’t know about Team Hoyt, grab a box of tissues before reading. I cry like a baby every time I read their story.

    http://sportsillustrated.cnn.com/vault/article/magazine/MAG1111767/3/index.htm

    (and if this web site takes links out of comments, you can look up “Team Hoyt” at WikiPedia… the link to “Strongest Dad In The World”, a story in Sports Illustrated, is the one that always gets me)

    ———————–

    Also, as a speaking person, please forgive any tests/comments/labels/etc that we use in trying to understand and communicate with non-speaking people. I don’t think it is possible for us to just automatically get it right on the first try. Many of our attempts have been rather poor, and probably will continue to be. We’re just as “retarded” or “low-functioning” when it comes to this as some of us label you… our tests/comments/labels/etc are *our* way of learning more about you in our terms… even when they go in the wrong direction. We usually believe that these attempts will help us better communicate and connect with you, to find or build that bridge between the familiar and the unfamiliar.

    Which leads me to another question I’ve had for a while: when we (“neurotypical” people) come across people who are wired differently, we usually try and teach them our ways of thinking, our ways of communicating. “We” try to get “them” to be more like us. My question is: is that feeling mutual? What would you like to teach us? Would you like us to communicate differently, and if so, how?

    Again, thank you for your article!

  8. Vanessa Ortiz says:

    Thank you for helping me see a new viewpoint. I will pass this on to try to spread the word.

  9. Wendy hanlon says:

    You are such an inspiration. Makes people that moan about the littlest things in life look silly!

  10. Tammi Goff says:

    My daughter is 9 and is nonverbal with Autism. Thankm you for giving her a voice and showing everyone that a label doesn’ t mean anything.

  11. Tammy Toland says:

    Thank you! I have a deaf autistic 11 year old daughter who does have a cochlear but hates to wear it,I would love to know what you think might help her to communicate (she’s nonverbal) the school has tried pecs but the pictures are so generic she doesn’t like it and she understands some sign language but won’t sign back if you can offer any advice I would really appreciate it!! Thank you

  12. Alexia Conrad says:

    As a mom to a 4-year-old non-verbal autistic son you have again reminded me to focus on what is really important. He is trying his best to communicate with us, leading us by the hand or showing us what he does/does not want to eat…and for that, I’m proud of him.

    I always tell him that, no matter what, we are here for you. Autistic or not, there is not one thing we can’t accomplish once we set our minds on it.

    THANK YOU!

  13. Mallory Elaine says:

    Thank you for your article. It was interesting to hear from a person with Autism and not a caretaker or advocate.

  14. chrisd says:

    Excellent article. I came across it through Facebook. Please keep using your voice to educate us. You are a pioneer in helping others.

  15. Kat Lakie says:

    Thank you. You have helped me understand so much.

    You are a light that should shine forth to be a guide for others who struggle as you do.

  16. Thank you, Amy, for explaining so well. Continue writing because I am sure your posts shed awareness that is very much needed.

  17. April-Anna says:

    I am sorry that you continue to face such prejudices. I am sure you can see that our modern world has much to be desired in way of improvements. While we have become technologically advanced, I think the human condition is that we are not really all that advanced, because if we were, we wouldn’t be seeing continueing disrespect to individuals such as yourself, little say all the other issues of our modern world.

    You are well spoken and I am impressed by your article. Keep shining your beautiful light, keep being you, you are beautiful!

  18. [...] might never be called things like “high-functioning” were you to meet them in person.Amy Sequenzia, of Rockledge, Florida, an Autistic self-advocate who regularly meets with government officials [...]

  19. [...] I can see this being his biggest life-long challenge. And after reading this article, it reminds me all the more of how and who he is, who he could become, and that I will always have [...]

  20. Julie Cooper says:

    My son is 5 and non verbal and we just started using an iPod touch and the proloquo 2 go system. I love seeing the smile on his face when he is able to use this to tell us what he wants. It is a beautiful sound to hear your child speak to you even if it is just with another “voice” I always knew he had a lot to say and now he can. Setting the bar high for him has always been our goal because he is just as capable as anyone, he gets tierd and irritable so rest and downtime is what helps him get through his tasks. I loved loved this article and the reminder that autistic or not everyone learns different

  21. conni says:

    Thank you Amy. I am a teacher of a classroom for 2nd and 3rd graders with autism. Please help all of us out here struggling to get our kids to communicate in anyway possible. If we are doing it wrong please help us! WE love thses kids and would like any help that you can give us. thank you :)

  22. mark says:

    Amy
    Do you type on your own or does your aide act as a facillitator(as in fc/facillitated communication)?
    Parent of a 35 yr old woman with autism

  23. alisa cooney says:

    I’ve been dealing with the opposite issue. People assume my kids who can talk, can communicate effectively. They look down on them or me when what comes out of my kids mouth (while clearly spoken) makes little no sense. My kids seem to have a memory bank of sentences that they try to mesh together in a coherent way. Often with the same connotation or to point that they sound exactly like the person they picked the sentence up from in an uncanny way that make your head spin to look for that person. I’ve been advocating via a website for over a year now. I think part of these issues are caused my the brains ability to only learn so many things at once and it tend to be obsessive in its learning, which would account for some non verbals having better communication despite being non verbal, and some verbals having poor communication despite verbal ability to speak in sentence. The main point I’m trying make it looks can be very deceiving and its time for people open their minds, and listen.

  24. alisa cooney says:

    I completly agree with everything you say. I’ve seen parents of kids labled low functional give up because they are made to feel like there is no hope. This was once true for people who have downs syndrome. No one should have to deal with people making them feel that there effort to beat the ‘odds’ is a waste of money(private, or tax payer). People view me as greedy or lazy for seeking help for my verbal asd kids. They assume talking means communication, this is so not true. Every person has a right to be part of life and be heard or listened to and not dismissed because if some social expectations, I get dismissed because I can’t spell or use grammar well. My kids have this problem far worse than me and it makes me worry as they have a gift that gos hand in hand with this struggle. So there at serious risk of getting a chance to use their gift in the real world because the social expectations will hold them down. I stopped expecting my kids to look my the eye I also defend them when this us expected of them by anyone I don’t care who that person is. I defend my kids right to have there sensory issue addressed in school and in other area. I get made to feel like a lazy or bad mum, who making excuses for her kids. I pulled my younger two from school last year because of thus very reason one has since just met the criteria for asperger syndrome my other daughter is only dealing sensory processing disorder which is still not recognized as a stand alone disorder. I’m not afraid to speak my mind it use the laws already created or fight for change even though my own mental health issues have caused people to tell me I won’t be heard or listened to. I shout till Im heard if I have to. Via my website and any other ways I learn to use. http://www.mumonamission.org I refuses to accept the high or low label get in the way of what I know my kids need and want advocate and later even help and support other dealing with similar issues of ignorance. Keep talking, keep fighting to be heard and listened to. Great work.

  25. Lauri says:

    This is amazing, Amy. Thanks so much for writing it, I will now be passing it out to everyone at H’s school. Hope to see you soon.
    Lauri

  26. Beth says:

    Thank you for an excellent post.. You are very eloquent. I wish people would realize that “Different functioning does not equal low functioning.”

  27. My experience with autism indicates a very complex neurology complemented by increased spiritual access and altered states. I found it helpful to tell them I know of their competence. Explain that you understand that they have telepathic type of communication system. Explain, that you do not share their amazing ability and are trapped in linear language based system. Tell them you are open and willing to learn how to bridge the gap. Be open and receptive to their attempts to teach you how to “join energy” with them. Learn to operate as a unit joined as one in love, empathy, attention, trust and calm.
    Be grateful for the the lessons they will teach you. You will be amazed how your relationship will change as they empower you to new depths of understanding what it means to be a nonverbal person with autism and what a privilege it is to be educated by them

  28. Neil says:

    In my eyes, there is no such thing as High Functioning and Low functioning because simply, there is no such thing as a High Functioning or Low functioning person.

    Beautifully said.

  29. Connie Corona says:

    I am clairaudient and as my vibration continues to shift, and expanded my abilities, I have been hearing some autistics, particularly those who have no way of communicating their needs. Are there any of you who would be willing to “join energy with me to assist in understand things from your perspective better? I feel that I am meant to be a bridge for those who have no means of expressing themselves.

  30. Niksmom says:

    Thank you for this. My eight year old son is nonverbal but has a speech generating device which has changed the way he accesses the world and the way (some of) the world sees him. I, too, hate the whole high/low labels of functionality…we don’t do that to neurotypical people; we simply say they have certain skills. Why should it be different for autistics? My son would be considered LF based on what he can’t do, but he has skills that are far above his age. Does that mean he has superpowers? No, he simply has skills. *sigh*

  31. Cynthia Gregory says:

    <3

  32. Renee says:

    Thank you so much for this. I am a parent of a high functioning autistic child and no matter what “level” of functioning he is labeled, he still has difficulties with the tests..because he thinks they are stupid and would rather be doing something else. Don’t stop putting your message across…please.

  33. Candace says:

    I teach elementary age students with disabilities and have been blessed by your article. My student with Asperger’s was tested a couple of years ago for placement reasons. The psychologist was very in tune with what was going on and told me at the conclusion that my little sweetie purposely undermined the test through acts of subterfuge because he thought they were mindless and stupid – and he told him so. He is very verbal, so when asked to point to the red box, he replied, “I would, but then your image of red and mine might not be the same. When you see red, I might see fuschia, or chartruese, or some other color. So, are you trying to test whether I have color-blindness, or whether I know my shapes and colors?” He then refused to do any of the other tasks in that section. Technically, his IQ came out around 110-115, even with the “corruption” of the test… so the psychologist figures he is probably in the 130-140 range in actuality.

  34. Nikki says:

    I know two kids who are autistic. One is my sisters friends son. This kid is amazing. He is excellent on the piano & never had a lesson. The other is my friends sister who I have known since she was born. She is non speaking. She lives in a home. She is now 20 and the home has helped her in many ways. The people who work there are awesome. I wish more people would realize autistic people are not stupid but they need a little more help. More research needs to be done so we know better how to help them.

  35. AZ says:

    Amen. I have CP and a speech issue I have at times been treated like i have low intelligence. I also think that scincetist are to blame for how society views people with developmental disability

  36. Marcie E. says:

    This is wonderful! I have a 10 year old son that is not totally non-verbal, but enough that he is often treated like the author. But…if any time is spent with him at all…his inteligence is apparent and amazing. I also find that when he is not challenged, because others think the task is “too advanced” for him, he is bored and interacts much less with others around him. This is a essential read for all…

  37. Janet says:

    Wonderful. This article made so much sense to me. I have two non-verbal boys 8 and 11. They try so very hard every day to help me understand what is going through their very complicated minds. People are so quick to judge those who are not the same, or what they perceive as normal. Guess what? We are all normal. Just that our normal is slightly different than the next guy and in a lot of cases, I would prefer our version of normal!!

  38. [...] Non-Speaking, “Low-Functioning” (shiftjournal.com) [...]

  39. [...] no less–autistic people, real, living, breathing people, feel pain and get angry and argue that even if they are nonspeaking, they can be perfectly capable of communicating for [...]

  40. dennis says:

    Firstly, understand that the ‘NTs’ in question are gaining Social Dominance by labeling negatively those they regard as lesser beings. This is a standard tactic of bullies – and like most bullies, these people understand perfectly what they are doing – even if much of their behavior originates in the subconscious and is fueled by Instinct.
    That is how social dominance drive plays out.
    Secondly, it is ‘obvious’ to MOST NTs that anyone who does not “display” adequate quantities of the correct instinctual functioning is NOT human – and that regardless of the capacity for ‘speech’ (talking with the fingers IS speech; I Need to write out what needs saying in many situations).
    Not-human status

  41. Sinead says:

    Thank you so much for this post, I ma the mother of an 11 year old non verbal son and I know that he has a rich, inner life but it is hard to bridge the gap between our world and his. Your writing makes a BIG difference and encourages all of is NTs to have a bit of empathy and see it from the other side!

  42. grandma says:

    I am going to write an article about what might be going on in my grandson’s mind as determined by how I see him act and react. Any help or insight is very helpful. I am considered “normal”? Hmmmm…what is that? I agree with Amy, we are simply different with different experiences and abilities. I so enjoy the time I spend with my special young grandson. All my children and grandchildren are special, all different, all unique. I love them so much! I hate labels, I think they are so restrictive.

  43. john says:

    thought im not diagnosed i somehow feel the same you do. Since my chiildhood ive had dificulty speaking but at first it didnt affect m and i was able to have a normal live. by the time i was 11 i moved far away lost all people who understood me and i was never able to be the same again because since i have dificlty speaking when itry people think im retarded and even attempt to bully me. for most of my life this wasnt a problem as i isolated myself in front of a computer learned computrr programming and made alot temporarly virtual friends from all over the world.

    stil im already 19 and ihave no friends and im not able to talk proply or handle a conversation. could this is a disability or something else? to resume some people even think im not portuguese even thought i born and grew here…

  44. Amy Sequenzia says:

    John
    I don’t know if you have a disability or not but you can find online supports that do not attempt to change or “fix” you, but accept the whole you.

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  56. Maria Taheny says:

    I am in my final semester before reaching PhD candidacy for Clinical Psychology. I am doing my dissertation on the lived experience of a autistic people (even though my professors would have a conniption fit if they saw me write that!) and more importantly, i am the mom of a 12 year old autistic boy who has his own set of strengths and struggles, as we all do. His are just more visible than my neurotypical kids.

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  58. […] needs and challenges, and how disability might affect an individual person. There are people like Amy Sequenzia, Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly […]

  59. […] has no one ever thought of opening up communication/conversation with the person to see where they might be going? is it back home? is it to school? is it to the zoo or the park? are they trying to escape from something they find aversive? try exploring the environment instead of locking it down. nonspeaking or having limited vocal ability does not mean that an person does not or cannot communicate. absolutely everyone communicates, and should have the right to do so. learn more here. […]

  60. […] Amy Sequenzia wrote that when Autistic people are seen as low-functioning it is often assumed they are incapable of […]

  61. […] no less–autistic people, real, living, breathing people, feel pain and get angry and argue that even if they are nonspeaking, they can be perfectly capable of communicating for […]

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