What’s the Difference Between High Functioning and Low Functioning Autism?

This post is inspired by many interactions I have had both online and in “the real world” with other parents of Autistic children.   I have noticed a significant emphasis on functioning labels in the autism parenting world.   When I have made the argument that functioning labels are arbitrary and make no sense, I am accused of not knowing what it is like to parent a child with “real autism” because I would not say these things if my child were not “high functioning”.  I am very, very sad for the children of such parents.  No child should ever feel like they are not completely and unconditionally loved.  I am also heartbroken for those parents, because they are turning their backs on a loving and beautiful relationship with their own children.  No amount of “support” and “sympathy” is worth that.

First, let’s address those functioning labels.

What is “high functioning”?   What is “low functioning”?

Often, the distinction seems to be made on the amount of verbal speech your child uses that is considered “functional speech”.

So, a child who can talk and have a conversation with you is “high functioning”?

What about a child who uses scripting instead?

What about a child who sometimes loses speech and uses typing to communicate?

What about a child who sometimes has a hard time with typing, so they have to use picture cards to communicate instead?

What about a child who finds that the picture cards are sometimes too overwhelming and communicates the only way they know how, with frustration and sometimes, SIB’s?   Oh, you didn’t know that behavior is communication?  Because it is.

All of these describe my child.   There are days when everything fits together, and she is fully supported and her sensory needs are being met, and she can have a lively spoken conversation, even with strangers.

More often though, her speech is scripted.

At home, she mostly types to communicate because there is no pressure on her to “conform” and stop acting Autistic already.

On the days where she has reached her limit with the very difficult task of trying to talk, she uses the picture cards.  Usually though, if she is too exhausted to talk, that is when her frustration comes out and she communicates the only way she knows how to.  Some people call them “bad behaviors”.   I know better.

Is that a “high functioning” or “low functioning” child?

You tell me.

What about the things that she needs help with?

At 11, she still needs me to stay next to her so that she can get to sleep.   She also needs a lot of help staying asleep, but that’s okay.  That’s what she needs and I am her mother.  This is what I am supposed to do.

Though she is an avid learner, my child needs help staying focused and “on track” with visual schedules and checklists.  Without them, she will often become confused and anxious because she is unsure of the next step in her school work.  We support her because she is worth it, and lamenting about how much support she needs won’t change the fact that she needs it.  It will just make her feel bad about who she is and the things that she needs help with.   Because we value her, we know that helping her with these things will teach her that needing support is not shameful.

When you go in our bathroom there are picture cards tucked inside the medicine cabinet to help her with toileting and hygiene.  She will often forget a step if there is not a visual cue to remind her.

My “high functioning’ child is not yet potty trained and still has to use diapers.  We support her and teach her, but we never shame her publicly or otherwise for being Disabled and on a different developmental path than other children her age.

Wait, does that make her ‘low-functioning”?  I get confused because she is also reading ‘The Hobbit”, which might make her “high-functioning”.

It’s almost like I was right when I said that functioning labels are arbitrary, ableist and totally made up.

Perhaps it is sensory or dietary issues that decide our functioning label?

We are fairly careful with our diets because many foods trigger seizures or migraines in my child.  Even though these issues are separate from autism, many people don’t realize or understand that, so I thought I’d include this in deciding her functioning level.   In addition to these health concerns, sensory issues with taste and texture  limit her diet even further.

My child  also has several sensory issues with auditory processing that makes going to crowded box stores or restaurants very difficult for her.  So, we accommodate her instead of telling complete strangers on the internet that autism is to blame for our hard time parenting or the adjustments it takes to support her.   (for the record, we eat meals late or early if we want to go out to avoid the crowds and we don’t apologize or become embarrassed by her being openly Autistic in public.  She has a right to participate in the community as much as anyone else while being her own authentic self at the same time).

She also requires a lot of proprioceptive and vestibular input and a lot of breaks throughout the day to stay regulated and happy.   We spend a lot of time on the trampoline, or spinning or swinging. We spend a lot of time stimming.  Because knowing when you need to take care of yourself is an important step to learning self advocacy, we always encourage her to speak up when she needs a break or sensory play time.  Some days she spends the majority of her time taking breaks instead of doing school work.  So, is she “low functioning” because her sensory needs are so intense or is she “high functioning” for recognizing what she needs to regulate her mind and body?

Confusing stuff, these functioning labels!

Since I am not sure she would fit neatly into any of these “categories” of autism anyway, and because I find them disrespectful to her as a human being, I refuse to use functioning labels.  My child is Autistic, and I love and accept her no matter how much support she needs.  No matter much spoken language she uses.  No matter what, because her life is worth living.  Honestly, I am disgusted by those who would force me to put her in a category and determine how worthy she is based on what she can or can not do.

How dare anyone attempt to place a value on my child’s life?

So, now Let’s talk about your assumptions

When you assume that my child is “high functioning” (whatever that means) because I tell you that it’s not okay to determine how much acceptance an Autistic person deserves based on a functioning level, you are making assumptions based on your own bigotry.   You are assuming that I could only love and accept my child because I don’t know what it is like to deal with “real autism”.   Do you realize that says a lot more about you than it does about Autistic people, or me, or my child?

It is saying that you think that loving a person you consider “high functioning” is easier than loving a person that might need more support.

It is saying that it’s okay to accept someone who is able to “pass” or conform, but not someone whose disability makes that impossible.

It is saying that some Autistic people are worth more than others.

It is saying that you think it’s okay to write off the very real support needs of people you deem “high functioning” because if they can pass sometimes, they must be able to get over themselves and pass all the time.

It is saying that you don’t know the first thing about autism.

It is also saying that you have some deeply held and rather troubling ableist beliefs that you should probably come to terms with and get help for.  You owe that to your children.

On a personal level, I find those assumptions to be incredibly insulting because you are putting a value on the life of my child based on your own ignorance.   Don’t you dare do that to my kid.   My child needs a lot of support.   I still love and accept her completely and totally no matter what developmental track she is on. I am disgusted and offended by those that think my love for her is conditional and based on her not being a “real” Autistic.   Nothing could be further from the truth.  I accept all of her, her gifts, her challenges, her whole complete self.  She can’t be separated from her neurology and I wouldn’t want her to be.

You are harming and dehumanizing my child and all Autistic people when you perpetuate your ableist beliefs.

Stop telling people that some Autistics are worth accepting while others are not.  Stop making assumptions about my child and other Autistic people based on your own ignorance and prejudice.  Most importantly, stop talking about autism as if you understand it at all.  Because when you use functioning labels, it is clear that you don’t.

About the Author

Romana Tate is the pseudonym of  a busy mom.  She does not write under her real name to protect her child’s privacy, but felt like she wanted to say something about people’s assumptions about  functioning labels.  She enjoys spending time with her family and educating parents and families about parenting their Autistic children with compassion, acceptance and unconditional love.

69 thoughts on “What’s the Difference Between High Functioning and Low Functioning Autism?”

    1. Hi Sabine, I’m Sharon with AWN. Please use original source in your linkback and it should be fine to translate and share on your blog 🙂

  1. I am so grateful this popped up on my news feed. It describes how I feel about my daughters situation and the comments I receive. I am starting to toughen up, but the statements do hurt, which frankly intimate that I have pushed this diagnosis on her, she’s spoilt, naughty….they see they outward projections of being anxious and overwhelmed. They don’t see the many daily issues we deal with, the magnetic board with signs, the quiet area, the toilet issues, the wandering. The great sentences, and big words do not mean she communicates well at 5. What about when she just won’t speak, what about the violence? Just thank you so much for this article.

    1. This is my daughter to a tee. Most people question my daughter’s diagnosis, beacuse she has a full vocabulary . Amazing article.

  2. In one sentence, and from a person who himself is “high-functioning”, the difference is that you’d never guess the “high-functioning” person had autism unless you spent enough time around him/her.

    1. That’s simply not true.

      So, when you meet me on a good day, I’m “high functioning”, but when you happen to see me crossing the street on a really stressful day, you would call me “low functioning”? Because I flap my hands and I do strange things and my whole body language says “autistic!”? Because I’m not greeting or even looking at you, when you talk to me? Because I’m not able to say a single word? Because my appearence says “not normal” or “not adapted” or what? But what about that advanced math exam I just passed at my university, only two hours earlier? Where I managed to answer all questions properly and without any sign of this strange “low functioning” autistic behavior, that now, on the street, gives me away as one of these “low functioning” autistic persons?

      Maybe some autistic people manage to hide their autistic behavior in public, all the time. Maybe they even hide and try to perform so perfectly “normal”, that they even fool themselves, when they are at home. Maybe they even forgot about their own, true self, because they were forced to adept and perform an act every single day of their lives. But that doesn’t change how they feel and how their brains process the world around them. It’s mostly just an act. So you choose to tag people by their acting skills and call that “functioning”? And you place one of those tags on your own forehead for what reason? So you can establish a border between yourself and those other autistic persons, that are not functiong as “good” as you? I think that’s really sad and you didn’t get the point of this article. Which, by the way, I find really really great! Thank you, Romana. Your daughter is a lucky girl.

      1. Anna, as someone who is highly-functioning, I can say from MY perspective that what Patrick wrote is very much true. Most people who meet me say I’m “quirky” or “odd” but never consider autism… often disbelieving even after I tell them.

        Autism is a gradient issue so it’s certainly not black or white, but a great many highly-functioning persons with autism can indeed blend in with neurotypicals to a large extent. For many of us, self included, getting there is a tremendous struggle (I only realized I was different in my late teens, and gained social skills by observing and copying those around me with innate skills) but it can pay off.

        It isn’t about hiding or fooling ourselves at all, but rather a means of being able to lower anxiety levels at the very least and possibly gaining access to a greater world. Being finally able to speak onstage in front of hundreds was a personal triumph for me, and I’m certainly not “hiding” anything nor being untrue to myself as you so coldly generalize. Becoming social has opened doors and made me happy. I don’t accept your judgment… or anyone else’s for that matter.

        1. I think you are all right. I am considered high functioning. Most people who see me think I am odd or quirky. What they don’t know is that jacket I am holding so tightly. It is keeping me together. Those cards I am shuffling they are why I can concentrate. That book I carry everywhere. is my comfort item. My purse has more sensory items in it that anything else. Oh, and when I am doing badly there is a teddy bear in my backpack.. I have learned appropriate stims. I call the fidgets. Depending on my environment, it is more obvious or less obvious i have autism. For example, I work as an CNA. The hospital has a good sensory environment. I am able to make it through the day without appearing autistic or more importantly having my autism impact my work negatively. A year ago, I worked at the YMCA. The reason I quit was because my autism was negatively impacting my job. Although still most people thought I was normal. Where I live is the right sensory environment for me, when I leave my city, autism often negatively impacts my life. Ranging from chicago where i was literally non-functional to a conference where i was able to appear normal after sleeping under a weighted blanket with a teddy bear. Even when I was non-function, I don’t believe everyone knew I had autism. When I am doing badly, I either become very quiet and focus on getting away from bothering me or i am extremely active, engage repeating words and phrases over and over. My point is what view as autism effect whether what I have is autism or if I am weird. My own family finds this difficult although they do know me quite well they still can’t figure out when I am more impact by my autism. You see the way I act has never changed I have always had ASD whether I was diagnosed or not. So my behavior they are used to. Functional level should be determined by how much your ASD impacts you and/or how many supports you have to use to keep it from impacting you. Not by whether people know it is or not

        2. I love what you have posted. I work with children on the spectrum, and I love the refreshing and brilliant points of view I receive from every beautiful soul with which I “work,”

  3. This is wonderful! I am so happy when parents not only listen to the whole of their children, but also embrace every single characteristic of the children. No judgement, no nonsense, no grieving. Acceptance, reality and joy.

  4. As an adult woman with autism who, like your daughter, sometimes scripts, sometimes melts down (as recently as this weekend) and sometimes is failed by her words–I really identified with this. You are right on…the lines between “high functioning” and “low functioning” really aren’t the neat little boundaries people would like them to be.

  5. Ugh, I’m so tired of this debate. I have a high functioning autistic child. I tend to use that label to folks who don’t know alot about autism. Because its easier to say my son has high functioning autism, than to say: My son is verbal, my son is mainstreamed in a typical education classroom with no learning support, my son is toilet trained, my son is social. Its just easier. Because autism is a spectrum, lets face it you can have a child who is nonverbal, in a diaper, in a corner by himself or you can have a child who is on his way to college. And guess what I’m a realist. I love love love love my child, and autism is hard hard hard.

    1. If you use this labels because people “don’t know”, all you do is continuing to perpetuate their ignorance. You teach nothing. And guess what: you can have a child who is non-speaking, wearing diapers and in college. This is reality for some. It is not reality for many because of attitudes like yours.

      I am the Autistic you describe as low functioning and unless you are Autistic, how do you know if it is “hard, hard, hard”? The hard part is having to prove our humanity and value. The rest is just life, as we know it.

  6. thank you for expressing what I have often thought with my son. I like the idea with the hygiene notes. I need to do that with my 16 year old.

  7. Wow! What a wonderful and well written post. I too feel this way about my wonderful daughter and hate the functioning labels.
    As someone who loves to focus on my daughter has a whole person not just aspects of her personality/ability I find the “oh she must be very high functioning” remarks so hard to deal with. In future I may just direct people here.
    Thank you xx

    1. I think one reason I resent the “oh you must be high functioning” remark is because to me it feels discounting, and is a very presumptive thing to say. The people who have said it to me were NT’s, and they had NO F***ING idea what I have been through, and what I still go through.

  8. Being originally diagnosed on the autism spectrum with Asperger’s (now Autism Spectrum Disorder) and the parent to three children on the spectrum with varying strengths and challenges and abilities, I am also one who doesn’t care for the “high-functioning” versus “low-functioning” descriptors, however my experience is different than Romana’s. The vast majority of parents and self-advocates I personally work with do not equate those descriptors with ACCEPTANCE.

    Up until the last section, “So, now Let’s talk about your assumptions,” I was following along with you but then our opinions diverged and of course that doesn’t make yours or mine more valid.

    It may have not been your intent but I shared your blog with a few different people (on the spectrum and not) and we all agreed that we felt defensive in the last section. One could argue that if it doesn’t apply to us, don’t feel offended, however I would respond that it’s much more effective to build bridges of understanding and acceptance throughout the autism community than to try and group all people who do support the use of “high functioning” and “low functioning” descriptors as being ableist, not knowing anything about autism or dehumanizing all autistic children.

    You see, many parents, educators and service professionals hear and read these descriptors directly from the medical. legal and special education world. Whether or not it is “right”, it is part of many provider’s vernacular and is commonly used in a systems setting where a school, agency or medical provider is talking about what services a person may qualify for. Is there room for reform? Absolutely. Does it mean that all parents who use these descriptors are ableist, don’t know anything about autism or dehumanizing all autistic children? No.

    That would imply that all autistics felt the same way about these descriptors. Some do. Some don’t. I would suspect it would be tone, action and further bias that went along negatively WITH the descriptors that would be offensive or dehumanizing, not the words themselves.

    I think banding together for autistic rights is a wonderful, needed movement, but at the same time it can become an “us vs. them” mentality if we’re not careful and that isn’t really helpful because it makes US look bigoted too.

    We can see throughout history that the best way for minorities or the oppressed to get equality and fair treatment is when the minority is able to work together with members of the majority. We have a lot to teach each other, and great things happen when we all work together.

    1. ✔️I felt the same way: loved the article up until the last section where I felt almost like “I” had done something wrong (and I don’t use labels with my daughter who has autism).
      I really wanted to share this post, but don’t feel right about the last portion. Otherwise a great post, though.

    2. “You see, many parents, educators and service professionals hear and read these descriptors directly from the medical. legal and special education world. Whether or not it is “right”, it is part of many provider’s vernacular and is commonly used in a systems setting where a school, agency or medical provider is talking about what services a person may qualify for. Is there room for reform? Absolutely. Does it mean that all parents who use these descriptors are ableist, don’t know anything about autism or dehumanizing all autistic children? No.”

      There is a problem when you excuse parents that talk about their children using these labels because that’s how the medical community does and because there is a need for services. When they talk on social media and in response to articles like this, they still talk like this. And they often stand by their words, even when educated about how harmful they are. So my take is: yes, ableism. And in some cases, yes, dehumanizing.

    3. I’m so glad you posted this response, Kelly F., because you expressed my ideas better than I could. I am the grandmother of a boy with autism who functions well a lot of the time, but needs accommodations throughout his day. All of us who support loved ones on the spectrum struggle to help them and educate others at the same time. I have sometimes thought my grandson would get better support if his needs were more “obvious”. I work with families who have children and adults on all levels of the spectrum. I don’t see our differences in struggles as not accepting, not loving or as dehumanizing. I hope we can eventually get past “assumptions” and realize we all need to support each other as well as our loved ones on the spectrum. My best accommodation is to talk frequently with my friends who are on the spectrum. They keep my eyes open and help me see the world from a variety of perspectives.

  9. wow, calling people bigots…
    High functioning and low functioning refers to a cut off score for IQ. It was necessary to allocate funds and resources to those who need it most and for other reasons. it doesnt’ refer to ‘behaviour’ on its own but is more complicated than that. If you have a low functioning child who destroys walls, pulls hair and runs off, and can’t follow directions, and harms others and themselves 24 hours a day, you’d know what it is like to be totally exhausted and unable to cope.
    Parents of low functioning children are very unsupported generally. Some choose to put their children in homes as they simply can not live another day being in such distress. i think you need to understand what it is like to live with a child who is unable to understand safety, and who is driving their parents to the brink of suicide. You shouldn’t be so judgement. I understand what you are saying and where you are coming from, but really, you have no idea how bad things can get with some families. Try to be a bit kinder. The world isn’t about comparisons, but understanding. And don’t call people bigots if you are one yourself. You are lucky you obviously have resources and inner strength. Some parents don’t get any eye contact, no verbal communication, and have to ‘lock’ their children in a soft cage at night to prevent them destroying the house. You are very lucky to have some good moments with your child. I invite you to watch this Australian A current Affair show where some families who were really struggling shared their journey.I hope this video will help you open your heart and not assume all families can find ‘peace and love and joy’ in their children.

    http://aca.ninemsn.com.au/article.aspx?id=8437692

    People who call others bigots are usually intolerant themselves of others opinions and life journeys.

    1. “High functioning and low functioning refers to a cut off score for IQ.”
      Wrong. This is simply not true. Stephen Hawking has one of highest IQ’s and cannot take care of himself. OR do you mean only Autistics deserve the grade, as if we are meat products?

      “child who destroys walls, pulls hair and runs off, and can’t follow directions, and harms others and themselves 24 hours a day”
      How do yo know some of us were not this child? We grow up, we learn, we learn how to cope or we are lucky to have people around us who help us deal with such moments. and we write and share about our stories, They are out there, for anyone who wants to read.

      “child who is unable to understand safety, and who is driving their parents to the brink of suicide.”
      This is a very ignorant statement. Some (many) parents are murdering their Autistic kids. And you are blaming them (us) for that. No parent have committed suicide and let their child live. Some have faked a suicide attempt.

      “Some parents don’t get any eye contact, no verbal communication,”
      You are describing my parents, yet they (my father, now) don’t use this language with me. They respect me

      “People who call others bigots are usually intolerant themselves of others opinions and life journeys.”
      Apparently the life journey of an Autistic person, as we are, does not deserve any respect, in your opinion

      1. I understand sometimes it is hard but me a a mom of my son david it was hard being told that he will never speak or he will never be a regular teenager or adult .And yes I been through alot with my son but I never ever have put my hands on him nor have i ever ever looked at him as anyone who cant. In my home that word does not exsist because i know off hand that it never has to be a word used. My son knows it is hard there are trials to overcome but my son anyone can over come any issue they have .So what if your not smart or cant seem to do the right things , no one is perfect .And those people who look at anyone with a perked eyebrow not understanding how it is to have a chld with Autism well to me like i tell my son David “you are perfect to me…

    2. People who say bigoted statements like you just did, Jackie (that ENTIRE rant was pure bigotry), like to feel victimized when they’re rightfully called out as being a bigot, and deflect. Which you also did.

      I am autistic. And you are a bigot. I am not a bigot for saying so, I just know my life better than you do.

      1. Jackie is right. I was a caregiver to two “autistic” children” the family called them “development delayed” for three years. They could tear anything apart as if ruining doorknobs, doors, toys basically anything were a job. They have consumed so many people’s lives, only to be non functioning in society. If the ratio of “able minded” to “low functioning” we’re 50/50 soviety could not cope. I say this knowing first hand. Twin “autistics” with two women to care for them. We got nothing else done.

        1. Molly people like you don’t have the real understanding of what autism and the symptoms. You are being a bigot for judging them because of their outbursts. People can’t handle their outbursts because they don’t understand what its like to have this condition unless they themselves have that condition and perhaps I suggest that you do some research about autism before making such bigotry statement like Jackie.

    3. The information about “high functioning” and “low functioning” having anything to do with IQ is incorrect. IQ (Intelligence Quotient) is completely different from IQ and in the DSM V, one’s IQ can place a person into the Intellectual Disability disorder, with various forms ranging from mild to profound. One can be on the spectrum and be a genius. The harder issue is finding the test that can best test that child based on his or her abilities and how verbal he or she is, as well as other possible factors that can influence whether the test can truly capture the correct results.

    4. Thank you! I’m not autistic, but my brother is. I felt attacked throughout the article just because I wanted to learn more. Instead I got a oh-no-you-don’t PCism lesson.

      One of my neighbors speaks nothing but Italian. I can only speak English. The assumption in this article is don’t even try to become friends with her if you’re not Italian. You cannot understand. Frankly, the two of us have gardening in common, so the language gap is worth working around, just like it’s worth working around my brother’s autism. He’s a really cool guy to know.

      I love my niece and love being around her. She is low-functioning, but not autistic. I wouldn’t want her around the author with the attitude that came through in all of the article, because that would stop my niece’s smile and her laugh. My niece may not understand a word, but she can sense a mood. She’s worth knowing and worth being around. According to this, I should just avoid her altogether because I will never understand what she’s going through.

  10. I am what many people would call “high functioning”. For short periods of time, I can interact with people and happily be in public. I eat almost all foods. I am very smart and well educated. I read quickly and have very high ACT scores. But what about my severe panic attacks? What about the fact that I’m TERRIFIED of strangers? I won’t speak to a new person. I sometimes go non verbal when forced to go ask a stranger for help, or call a business on the phone. But you’d never know that, because if my phone rings, or someone comes up to me and starts talking, I react ” normally”. As a child, to make it through the school day, I needed constant stimming. I would play with Velcro, draw on things, fold paper, I even would erase my own skin to satisfy my sensory needs. I needed lots of help staying focused, as well. They thought I had ADD. So they put me on medication and made me stop stimmimg. They would put me in a room devoid of sensory information so that I would not have any outside distractions. They ignored my breakdowns, shunned and punished me for my panic attacks or “bathroom accidents”. They made my social ineptitude MY fault, and made me feel like a freak my whole life. But I’m high functioning, because I can pass for normal for periods of time. And this is why functioning labels are harmful – only severe cases of autism get talked about, only low functioning kids. I could have had a diagnosis YEARS ago, if my parents knew what autism really is. But they don’t, so I’m 20 and only just finding out about my autism, and finding out just how badly my family and school handled my condition. I now stim and flap freely, and I am open and honest about my needs, or when I need to remove myself from an environment. I am now free to take care of myself, and my own needs. And I can assert that functioning labels are bullshit, but not only that, are directly harmful to autistic people.

    1. My question is why is the “label” that is the problem. To me, it seems like the problem is a lack of awareness that autism comes in all difference colors– that autism exists outside of those who are non-verbal. I have a dear friend whose son was non-verbal autistic, and that was how I saw autism. I noticed all of the odd quirks in my daughter–how she melted down in times in stress differently than her peers, how she shut down when stressed, how she rubbed her belly-button until it scarred, how she spun and twirled constantly, how she could not communicate with others if she didn’t have a composed speech to say, how she didn’t understand that others don’t know how she feels if she doesn’t tell them and how she struggles empathizing with others if she does not think it is a big issue. Her teachers scolded her because she wanted to touch everything including stuff that wasn’t hers, and she appeared to be unfocused on many things and then hyper-focused on special things such that you can’t pull her away without a meltdown. Her school-children friends asked me what was wrong when she couldn’t handle typical social interactions that involved stress or when somebody broke a “rule.” I had no idea that she was on the spectrum until the psychologist performing an IQ test saw her shut down.

      Now I struggle with others dismissing her issue because this is not what ASD is “supposed” to look like and it supposedly doesn’t affect her all the time–her socially awkwardness and lack of friends is dismissed as typical 5th grade stuff. I am the overly protective mom who is looking for special accommodations because my child can’t talk to her teachers when stressed and shuts down. I am seen as making excuses for a child who is being willfully disobedient when she shuts down. The only avenue of hope I have is using a label because her teachers have drawn a box around why they think ASD looks like, and it is not her. Autism Spectrum Disorder is just that–a spectrum. We have attached a hierarchy to what is “higher” and “lower” but what if it were colors–like ROYGBIV. She is on the violet side of ASD so she needs what many kids on the violet side need, including social training. She needs to be loved AND liked AND accepted, not despite her differences but because of her differences–they make her the amazing person she is.

  11. Pingback: Honesty, attitude and functionality | lovenlearning

  12. Wow. I don’t even know where to start. I use the term low-functioning to describe my son because it’s an accurate description. He is 19 years old, is not verbal, and needs constant one-on-one care because of the severity of his SIB and complete inability to care for himself. He also has two loving and devoted parents who adore him and care more about him than they do about themselves. As a matter of fact, everyone who has worked with him over all these years adores him. He’s incredibly sweet and funny. How dare you say we are dehumanizing him by accurately describing him?! If neither the high nor low label fit your child, don’t use them. Stop the judgment.

    1. I am just like your son, so I am judging. I dare to judge because for a long time I could not respond to statements like yours and had to listen to people talking about me as if I was a stagnant being, unable to learn and grow.
      It is dehumanizing because it is not an accurate description. Define high and low functioning before using the labels.

      1. I’m not sure how others define these terms, but to me they convey the person’s current abilities to communicate and independently care for themselves. I do not see them as indicating a person’s worth or value as a human being. I value no one more than I do my son. I don’t even understand someone who would think a low IQ implies a lack of worth! I am listening to you and trying my best to look at how I speak about my son. I am just unsure how to convey (what I see as neutral) factual information without possibly hurting him. I’m sure there have been many ways that I’ve hurt him, as my parents did me, but I’ve never intended to. I think a lot about how I can be a better mother for him. I do try my best to talk about him in front of him as little as possible, but there are circumstances (like doctor visits) where I don’t see a way around it. I so wish he could communicate as well as you can. There are a ton of questions I would love to ask him. There’s so much I want to know about him that he just can’t tell me. As things are now, I have to guess so much. I know I am getting so many things wrong. I don’t know what the answer is. I do appreciate your feedback.

        1. We agree in one thing: IQ is not a measure of worth.
          One thing that everyone should already know by now is that EVERYBODY communicates. Words are not the only way to communicate. If a person cannot understand, it is that person’s deficit, not the fault of the one who communicates without words.

          Stephen Hawking: according to your definition, he is “low-functioning”. Yes, he has a communication system,, but that is something that could be taken away from him. He would still be the genius he is, even without his “ability to communicate”. Would he be “low-functioning” then? Or would he be a “high-functioning” in his brain, and nobody would know?

          There is a very real and damaging result from using functioning labels. Using “low” functioning will always imply that the person should be pitied, or ignored. I doubt your son wants pity. I am sure he does not want to be ignored. The origin of this labeling comes from the grading of things like meat. The “low” grade beast is undesirable, shouldn’t be touched and should be left to rot. Then thrown away.
          Sadly, the use of labels results in similar attitudes toward us. And it does not help with our self-esteem.

          It does not mean that if you use this description to be accurate, you don’t love your child. But the labels were created by people who don’t really care or believe that your child can accomplish great things, his own way. Being very disabled, like I am, does not prevent that. Being unable to communicate in the usual way, that way most people understand, does not mean not communicating, and it does not mean that he will never learn. Some Autistics only found the words in their 40’s.

          I suggest what was done for me – and still is. When I can’t type – for whatever reason – in doctor visits, for example, and someone uses labels to define me, whoever is with me has already been directed, by me, to stop the conversation and say that I do not use this language and when referring to me in person or in writing that this language should not be used. I know there are situations, like funding and services, where it is hard to get away. But it should always be tried.

          You son is your son, the way he is, if you use the labels or not. We have been saying that the language hurts for a long time. It hurts us and makes us feel like lesser people. Listening to this everyday, by everyone, is hurtful. My suggestion is: don’t use it. It might “help” other people but it does not help your son. I have been there, I know.

          Your son might accomplish a lot but even if he doesn’t, he does not deserve to be qualified as a lower grade person because some “experts” decided that, or to please others, or to make easier for other people to understand. How much we can do is not more important than what we feel and think. And words matter. They can also hurt.

          The reasons why the language is arbitrary have already been explained in the article. Its use does not improve our lives, but it can cause damage. It prevents us from a proper education, it prevents us from being part of the decisions that affect our lives. It is often used to control us, or to dismiss our voices.

          We all have needs and we should receive support for the needs we have, and be heard when we have things to say. Classifications like labels are prejudice. It judges us before we have a chance to show who we are. And even if you know your child, you don’t really know who your child will become.

          1. I know it’s a little out of the ordinary to comment and not take a strong stance on the issue of the article, but I appreciate both of the above perspectives.

            I can partially relate to Beth’s position; my mother has very similar struggles. My younger brother (age 14) is autistic. Because he is nonverbal, communication is difficult. Of course he communicates basic emotions and cravings through noise-making, reaching for things, SIBs, etc. My parents and caregivers have tried teaching him to use sign language, picture cards, recordings, you name it. But we’ve failed to find a method of communication that works for both him and us. If it’s this difficult for me to watch my parents struggle with knowing how to help and care for him, then I can’t imagine how difficult it must be for the parents in that position. I can only offer than you are not alone in this struggle.

            Like you, we’ve been blessed in that my brother is very sweet and funny. He is adored by his parents, brothers, and caregivers. Not as an autistic child, but as a son, brother, and friend. Because sweetness and humor are not from his disability. Love and Joy come from a place far too deep to be extinguished by any disability. When fragments of those things surface, they might not look the same as if he was not disabled, but we must remember to celebrate and treasure them for what they are and where they come from.

            Amy, I appreciate your input; I don’t like the ease with which many people pass judgement and label. But that is a double edged sword in this debate. Everybody’s struggle is different, and both the article above and too much of the dialogue around this issue are focused on pointing fingers and assigning blame. If we aren’t defining people by their conditions, then autism is a condition that hampers my brother’s life; it isn’t part of his basic identity. When our family talks about his condition as a problem, we are not criticizing him; our sole intent is to help him through his struggle. For our intent to be questioned by outsiders is very offensive and hurtful.

            That said, while I was initially against the article, reading some of your commentary – particularly the last comment – has convicted me in the way I speak to my brother. I have caught myself saying things in front of him, sometimes to him, that I would never say if I knew he would comprehend them. For numerous reasons, we suspect that his cognitive function is fairly limited by his disability. So in all likelihood, he doesn’t comprehend most of what is said about him. But there is certainly a chance that we are mistaken and I pray that if we are he forgives me for the times I’ve been in-compassionate and ignorant. And ultimately, he deserves to have his dignity preserved regardless of whether or not he understands our words.

            Even if I don’t understand your opinion, I’ll concede that you live under different circumstances than I do and clearly have a better idea of what it feels like to be spoken of with such language. I’ll accept that you have superior experience in this area, and look for ways to apply your advice to the way I interact with my brother.

            In conclusion, I hope we can all be more willing to stay our own opinions, listen to each other’s stories, and change our default responses from condemnation and judgement to consideration and sympathy. And that goes for both sides. Once again, thank you for your commentaries, I appreciate the discussion.

          2. This is actually a reply to Andrew. Neurotypicals often say things to diminish the significance of autism in an autistic’s person’s life. They think it comes from a good place, but they can’t understand what it’s like and come off to autistic people as sounding highly ableist and clueless. A few examples:

            “If it’s this difficult for me to watch my parents struggle with knowing how to help and care for him, then I can’t imagine how difficult it must be for the parents in that position.” You’ve already demonstrated your bias. You identify more with your parents’ struggle than your brother’s. Which, you being NT, makes sense, but it’s still biased. Your parents struggle with raising an autistic child? Psht, what a sad story, but they’ve never been on the receiving end of ableism, of hearing yourself being referred to as a “problem,” as “low-functioning.” This comes not just from home, but school and otherwise. It’d be revolutionary if NT’s stopped feeling sorry for themselves, and accepted their child for who they are, rather than constantly trying to “fix” them. If it’s more difficult to watch your parents’ struggle with your autistic brother, rather than your brother’s struggle with his NT parents who are not accustomed to anything other than ordinary communication, that is a bias you have just demonstrated. You said your mother “has very similar struggles.” Somehow, you’ve made it about her and not your brother.

            “Like you, we’ve been blessed in that my brother is very sweet and funny. He is adored by his parents, brothers, and caregivers. Not as an autistic child, but as a son, brother, and friend. Because sweetness and humor are not from his disability. Love and Joy come from a place far too deep to be extinguished by any disability.” This is a statement that is resulting in my having great difficulty fighting the impulse to curse and scream at you. Holy guacamole it’s so awful. “Not as an autistic child.” NO. He has autism and it is CORE TO HIS IDENTITY. If you cannot adore him as the autistic person he is, if you have this need to separate his good qualities from his disability, you are implying that he is those things DESPITE his disability, when again, his autism is core to who he is as a person. His sweetness and humor MOST DEFINITELY DO come from being autistic, and are inseparable from it. How do I know this? Because MY sweetness and humor are a direct result of being autistic. I cannot know what kind of person I’d be if I were NT, it’s an impossible question. My sweetness directly derives from years of awful, cruel treatment by bullies who mocked me endlessly, because of my differences. My humor directly derives from the unique insights I come up with in my autistic brain. So don’t you EVER DARE separate his good qualities from his autism.

            “When our family talks about his condition as a problem, we are not criticizing him; our sole intent is to help him through his struggle. For our intent to be questioned by outsiders is very offensive and hurtful.” No, your sole intent seems to be to help yourselves through YOUR struggles, and the offensive/hurtfulness stems, of course, from the ego and denial. Do not talk about his condition as a problem. It is what it is, and the problem isn’t his condition, it’s an ableist society that has no idea how to effectively communicate with those like us.

            “I have caught myself saying things in front of him, sometimes to him, that I would never say if I knew he would comprehend them. For numerous reasons, we suspect that his cognitive function is fairly limited by his disability. So in all likelihood, he doesn’t comprehend most of what is said about him.” And there’s the admission of guilt. You do say hurtful things, but it doesn’t MATTER because he doesn’t UNDERSTAND. Or at least, you THINK he doesn’t. But from I’ve heard from the very people who heard these things being said about them, THAT HE PROBABLY DOES UNDERSTAND. Do not come here and tell us you hope he didn’t understand and if he did, you’re so sorry. TELL HIM THAT.

            Hearing NT’s talk about their loved ones with autism makes me want to bash my face against a brick wall repeatedly. Ya’ll say so many ignorant and hurtful things and don’t even realize it!

            Now, the upside is that you’re here and hopefully listening to what we have to say. But that’s all you should do. Listen. Not make excuses for yourself or your parents, not admit to your guiltiness for saying hurtful things to your brother because of your assumptions about what he can understand. Do not separate our good qualities OR bad qualities from our autism. It is integral to our experiences and being.

          3. It’s interesting to hear the debate. But even autism itself is a label. My husband does not agree that we should even use the ASD label because it is a label and a box that will hold back our daughter and make her think less of herself–that this is a disorder and that she is broke.

            The problem seems to be more that the specific term of lower and higher can make some feel there is more value in being a part of one group than another. They changed the terminology for those who are intellectually disabled, no longer using its prior term of mental retardation to describe those with a low IQ. This was based on the same concerns that the terms can be degrading. Perhaps there is a different name that can be used because as much as all of us hate to be put in a box, in communicating at all, we are all confined to such an imprecise concept as language. A label, including ASD, conveys a certain amount of information, regardless as to how imprecise it is. Although the word “love” fails to fully convey the feelings I have for my daughter, I still use it for lack of a better word. And yet, people use the same word to describe their feeling toward ice cream.

        2. Beth, I agree totally and completely that your son has a more severe form of autism than me. However functioning labels (High, medium, low) serve no purpose. For example 80% of people with HFA do not have a job and do not live independently. As for communication, I have three communication disorders. Apraxia, expressive language disorder, and LD in written expression. I can talk but I often do not feel like I communicate what I mean. This is frustrating. I understand both how you feel and how your feels. Functioning labels mean nothing. And seem to me to only cause friction among the community. Severity labels serve a purpose the tell you and your doctor how severe the autism is. But I still have trouble knowing where the cut off is. For example, obviously individual who self harm, have no sense of right wrong, danger, and other import concepts and obviously those who can’t live independently are at the bottom. And obviously those who can live independently and do not feel that ASD negatively impact their live are at the top. Everyone else I have no idea where we fall.

    2. I work with adults with developmental disabilities, many with Autism, in a vocational program in California. As someone who manages services for those individuals, I feel it is imperative that I continually expose myself and my staff to other perspectives whether it be from those I serve that cannot communicate in a typical way or the parent of an adult with Autism.

      I think something to take away from all of the perspectives mentioned above is that labels can be a very personal experience. All of the ideas and stories above could also apply to race identities just the same. Race is a very sensitive, yet more widely discussed topic. Such as race identity and social guidelines, what one may use to identify them self or their child, may be found offensive to another who is “of the same race”. Words and the value it implies that one life is more valuable than another is a prevalent issue. Such as race relations there are hateful, naive, ignorant, rude, uninformed, over opinionated and extremist people making comments and labeling. I enjoyed this article as it reminded me of a book “The Seven Keys to Unlocking Autism” by Elaine Hall and Diane Isaacs (also from Autism the Musical). I use this book as a training tool. I also feel that using the terms high and low functioning can be offensive and uninformed. I think such as all social labels, we can continue to learn and develop terms that are accepted by the community themselves. All of us from the Autism community and typical community can benefit from reading stories like these which help us build bridges to close the gaps in these worlds and walk a mile in the shoes of someone living with Autism.

    3. Personally Beth you spoke the words i did on another comment, as its exactly like my situation. I read this article and was infuriated, and i think unless any of these people have dealt or had a severely autistic child, their comments are invaluable. Like yourself my daughter will require forever care, shes 4 and we have just managed to get her standing. She hates certain sounds, cant eat certain textures, cant talk, cant communicate, doesnt recognize her name…she still doesnt understand her body functions – imagine a horrific meltdown each time your child urinates…its absoltuley heart breaking to see her struggle. In her mind shes piecing things together but she loses signal. Like being stuck in a body you cant control…her first day at school i pushed her in a pram (its a school for autistic kids but shes the most severe) and she looked at all the other kids walking around, then started slapping her legs and going into meltdown because she cant walk and play like all the others. To me their is a huge difference between a slight learning difficulty, and someone who will require forever care.

      And Amy you say you are just like her son, yet your able to put sentences together and argue over a topic? … if you were at some stage “Non functional” and your now able to understand a conversation and discuss/communicate with others on a post, then you give all us mothers hope that if we keep trying our best, things will get better.

  13. This is by far one of the best posts I have ever read from a parent of an autistic child. Although my son is autistic (15 yrs old), for the first time I feel that I finally have a good understanding of these labels, and how inappropriate they are. Thank you so much for writing this and for writing it so well.

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  15. Amazing post. It means a lot to see those that advocate for the Autism spectrum out there. Your daughter is truly a gem. Tell her to always believe in herself. She is an excellent communicator – a lot better at communicating than some verbal people that I know, in fact!

    To both you and your daughter: keep up the awesome work!

  16. You sound like an amazing parent. I’m a 53 year old adult woman with AS. I hate when people tell me, after talking with me for about 2 minutes, “Oh, you are high functioning.” As if that should somehow make me feel better, which implies that being autistic is bad. I feel like saying, “that’s truly amazing you can make that judgement after just 2 minutes, being that highly trained autism experts take hours and hours to make a diagnosis of autism at all. How did you get to be an expert on autism?” It’s amazing the stupid things people say. Your article really helped me. Even though I’m married with 2 boys, I have profoundly difficult challenges to deal with on a daily basis. However, by far the biggest challenge I’ve ever dealt with is the hurt from being shunned and looked down on for being different.

  17. I have high functioning autism but that does not mean I can’t be an EMT someday because I can because I’m really smart my disability can’t stop me in life plus I’m proud of my autism it makes me who I am.

  18. I’m Abby and I’m 17 years old I have high functioning autism and I have meltdowns when I have melt downs it feels like there is a bunch of ants crawling up my body and they don’t go away I do constant head banging and scratching my arms up but there’s also times where I’m very happy and I love to play, sing , dance and go for long walks wile listening to my iPod my therapist Megan really helps me calm down when I feel upset my parents ruby and Daniel Graeber are really understanding and also know how to calm me down but for the most part I’m a sweet, kind, helpful,beautiful person.

  19. What a beautiful and heartfelt post. It taught me a lesson today, one I probably needed to learn sooner than later, and since just know at 43, i’m finding out for the first time that i’m autistic, after living my entire life without limits, without labels, it makes sense. Had I been labeled anything other than me, who knows what could have been.

    I love having Autism, know that I understand why I was so different, its super cool! It taught me to learn to read fruits and vegetables in order that we can cure disease and help what ails us. But it wasn’t until I read a book about the effect of banana’s and the dopamine and norepinephrine effect that can help with the depression part of it, that my brain began to work in an entirely new way,

    My synapse function caught onto that one thought about bananas, and God’s word, then one thought connected to another thought about the neurotransmitters, then i began to realize why God made me so interested in science, psychology, food as living medicine, curing the body from within with food, but most importantly how he taught me to leave my life and actions in the hands of my lord Jesus Christ.

    I have to say my brains synapse function in my nervous system got so fast that I actually felt a pain from the connections, and began to cry. Excessive cortisol hyper sensitizes the brain to pain, such that even the slightest twinge can excite the nerves of the brain, causing headaches. I must have reached that tipping point because I also got a headache. Cortisol raises your blood sugar, putting you at risk of diabetes. High glucose levels then bump up your insulin levels, which then drop your blood sugar – and all of a sudden – yes, you guessed it – you’re struck with wild cravings for Twinkies. You might experience nausea, heartburn, abdominal cramps, diarrhea, or constipation as a result of too many stress hormones.

    Then the body goes through it all over again. But with the right diet of pear shaped fruits, nuts, vegetables and things in the right shapes and colors you can live a normal life with Autism.

    I hope to teach everyone, especially my Autistic brothers and sisters. I’m trying to put it all together as this is so new, as of the past 3 months and it has been an awesome ride. I’m making flash cards, because I just realized that is how I learn as well, by photos and connecting the dots like.

    It turns out that my interest in reading all the research on cures for cancer and different experiments with treatments, information on life extension, and psychology, lead me to store all this information, like a storage file and after reading a book about the psychology of marketing it all started to flash before my eyes like a book.

    While trying to prove that connection and idea about food having a language of its own wrong, I inadvertently came across a fruit that is detrimental in leveling out or regulating the extreme symptoms of Autism and Alzheimer’s, while being able to cure Cancer, Aids, Ebola and inadvertently ridding the world of the epidemic of violent crimes.

    Its the rose apple, which we stopped eating because it was growing too fast to control. But that is the entire reason it will cure!!!! It repopulates very quickly and helps with digestive issues, fights both fungal and bacterial infections and detoxifies the liver. Its high in Vitamin A and has an alkaloid that regulates blood sugar control. Seems the high mercury levels can be cleansed out by detoxification effects of the rose apple fruit, as part of a whole foods balanced diet, which is really Jesus’s Way. Its also a preventative measure for pregnant mothers, in that it will help the baby to develop with an intact stomach lining, which will prevent autism and alzheimer’s.

    I’m very interested in what the future holds, because this fruit and diet can cure brain cancer and brain damage too, which is really just extreme digestive systems disorders that have been misdiagnosed. Since we cannot digest most proteins, I also stumbled upon the goose fat which is high in monounsaturated fats and duck protein which supplies amino acid and proteins that are not so hard on the stomach lining which make it easy to break down the fat, which is also made possible with by the serotonin. Roasted cashew nuts are also good, as they are easy to digest.

    Foods that look like a pear are great for diets of autism, foods that have a pear shape and seeds in the bottom round part are good for autism diet, that signifies the stomach, for example the butternut squash is white on top, pear shaped and has big seeds inside. the hard shell signifies it is important for the diet of those with digestive issues (all ASD stems from digestive system, its the pain of digesting food and processing the cortisol/norepinephrine which cannot be expressed verbally by some, the pain is so intense that it manifest in other ways in the brain)

    I wanted to become a doctor but never continue on in college because it seemed to restrictive, but that never meant that I stopped studying. My extreme interest in finding a cure for cancer and my intense desire to read (for hours on end at times) which I also learned is a trait of Autism, helped me to see the world differently. Thankfully, because it may just have helped us change the world as we know it. After all it’s going to take a conscious collection of positive people to make the world a brighter place.

    I must say im happy to learn that I have Autism. Because now I can live my life the way I want to and I can own my CRAY CRAY. I have always been the different one, but without having the label of Autistic or disabled (i was born pigeon toed and now have perfectly straight legs) I live my life as a survivor. I actually founded and grew my own business from $250. and was in business for 15 years, winning awards for wig design and having much fun with it all! I have been in a loving relationship for 15 years now and I am excited to see what the future holds.

    I have self taught myself to cook, have taken lots of biology, chemistry, psychology, marketing, sale and a few, writing classes in college, but never realized why. Until God opened my eyes. I now know that he wants me to be a part of that voice for those who don’t have one.

    I thank you for being our voice as well!

    Now I know why they call the rose apple “fruitoftheangels” it is here to help us fly in spirit!

  20. This is wonderfull to read. I was diagnosed 3.5 years ago, and I personally was told high functioning autism. So this is what i have thought about myself for 3 years. But I have recently got a copy of my ados report which says autism spectrum disorder. I just googled what is the difference between these and this was the first thing that did not have aspergers in the title so i read it. You say you describe your daughter perfectly but I think a lot of it describes mep0 perfectly too, partiqually communication. Sometimes I can talk, but sometimes I can not. I can not control this and when I can not talk i can not talk to say I can not talk. I wish people would understand that like you do. College have been helping me to say if I am ‘good’, ‘have a problem’ or ‘too much/need a break’ with colour cards. It has had some sucess, I like it because I can use it to talk for me but not all people will let me use cards when they know I can talk. But it is a system i am planning to use at university I september. Yes, I am going to university-so as you say I could be high functioning. Thank you for writing this, just from reading it I can accept I am not either. I am just me. Also I am interested in what you say that sometimes your daughter types to communicate. How does that work? Can you tell me more information because I would be interested in trying it. Currently all I have is talking or the 3 cards. If it is more than the 3 cards like I then need to say what is wrong I need to be able to speak or no one can help. So I am interested to know if your typing could help me.

  21. I have a child with low functioning autism and a child with high functioning autism. The only difference is one has an Intellectual impairment with the autism. I he only difference is one has higher needs and doesn’t function in society without help.
    To say that people could love there children any less is a harsh statement. Feel the love we are all in the same boat.

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  23. I work with a student who is autistic. We have good days and bad days. My student is main stream and very verbal, but needs one on one supervision every day, all day. Some days are easier than others. Some days we make it to sixth period without a hitch, other days we scream and cry because someone was too distracted to notice us waving.
    Thankfully people are more aware of autism, so students are understanding, and many have known him longer than I have. I often wonder how my student will do when they graduate. I do the best job that I can, but I feel like it’s not enough. I wish there was enough time and support for my student. With the right support, they could get much farther. But I fear that once they are done with high school, their family might let them fall through the cracks. Will my student improve and go on to college? I hope so. I hope that they get to the point where they don’t need one on one supervision all of the time. I hope the best for them.

  24. I am a mild Aspie myself, but I have enough coping mechanisms now that you would never know. To most I am just a super bright, slightly weird guy who spends too much time on my laptop, little do they know the laptop allows me to be in the room without feeling overwhelmed by being in the room.

    I have a son who is soon to be 4 with classic Autism. He is non-verbal but exceptionally intelligent, hard to feed, not potty trained, sleeps terribly, can’t interact with kids, kind and gentle soul but his anger management issues are off the charts.
    I like to classify him as high functioning, because it gives me hope and reminds me he is just a normal kid with some quirks. I also like to tell everyone he is autistic because it gives them the concept that his behaviors will not be fixed with discipline, physical or otherwise.
    I am happy to label him both Autistic and High Functioning, and I will happily accept him until he outgrows those labels or owns them for himself.

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  26. The only thing I have a problem with is people that say their child “IS autistic”…
    I have a son who happens to ‘have’ an autism spectrum disorder diagnosis BUT, that’s not who he is!
    It only gives a name to some of the behaviors/traits that others see.
    If I feel the need to speak up on his behalf I say, “My son has an ASD diagnosis.” NOT, “My son IS autistic.”
    Functioning labels in terms of IQ as we understand it, as well as verbal ability I would have to say only IMO, is pointless.

  27. I have been told by a professional that I have high functioning Autism. But others who meet me don’t really see the Autism side of me. When I get worked up I have moments of more high pitched speaking – some say that I’m giving sass without me even noticing it. But my problem has depression and anxiety thrown in there. I have horrible times of depression – so I think that is more visible then the Autism. Also, if it matters, I am 20 and a female – where usually it seems Autism comes in more boys.

  28. Newly Excavated Aspie

    !!!!
    This is a very well-written and badass article.
    Personally, I like having the terms high-functioning and low-functioning as a tool for people with autism or aspergers to identify themselves or their current state. It sort of helps with perspective I think, at least for me. But it is terrible that parents and family so often use them as some sort of pity-classification system. That all just reeks of “Autism Speaks” mentality.
    But this brings to light an interesting discussion about the use of labels as a convenient segue into an understanding of the vast range of esperiences and symptoms, vs a harmful binary classification system that tries to justify shitty attitudes.

  29. Hello! I came across this researching whether or not the use of high vs low functioning autism is clinical or not. In Canada, when one applies for a disability tax credit as a parent with autism, the child’s doctor (who may or may not know your child well enough to even MAKE these comments), fills out a form regarding how the child’s autism affects his/her life under six specific areas: seeing, hearing, walking, eliminating, feeding and dressing and “mental functions necessary for everday life” (this part very specific to autism) as well as some life sustaining therapies qualifying as well. http://www.cra-arc.gc.ca/E/pbg/tf/t2201/t2201-15e.pdf

    In my view, they want to know if the child with autism is high or low functioning, without directly asking. High functioning does not qualify, low functioning does, there’s a grey area in between. They won’t look at the child’s assessment to determine this, rather, base their decision solely on the doctors comments. I have a charming, chatty son with autism. He doesn’t LOOK autistic when he’s feeling well. However, he is always high maintenance and requires full time support for everything. My doctor has NO IDEA how my son’s autism affects his daily life.

    I consider this discriminatory, at best, and at worst, is making life rougher for people who actually should qualify but are too tired and or polite to convince the government of their child’s autism severity.

  30. For someone who doesn’t want people to make assumptions about your daughter, you sure like to make plenty of assumptions about everyone else.

  31. “No child should ever feel like they are not completely and unconditionally loved. I am also heartbroken for those parents, because they are turning their backs on a loving and beautiful relationship with their own children. No amount of “support” and “sympathy” is worth that.”

    These assumptions are your problem.

    Oh, so because parents decide to label their children’s ability, that somehow means that they don’t unconditionally love them or that they’re missing out on their children?

    You are entirely, entirely stupid.

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  36. Pingback: Why Functioning Labels Harm the Autistic Community – ABLEISM- discrimination in prejudice among disabled people

  37. Pingback: The language of ‘functionality’ does not function | Queerly Autistic

  38. The only reason I began to look into the functioning ‘labels’ was because I have found a couple secondary schools that have autism units but the child has to be ‘high functioning’ to get a place

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