Approximating typical: navigating the label “high functioning autism”

School can be a difficult place for children on the Autism spectrum. It can be particularly tricky for those who approximate typical, who seem almost to be like everyone else. These are the children who are sometimes referred to as high functioning (children with HFA – High Functioning Autism or Aspergers).

I don’t like the term high functioning, because I have noticed that it has sometimes come to imply or equate needs less support, or gets less understanding.

These children do not have less autism: they have the same challenges with joint attention, understanding nonverbal social and communication cues (including body language, facial expression, tone, figurative language, and nuance), understanding the perspective of others, and getting it that expectations for social communication continually shift based on context. They can be brilliant with collecting and memorizing astounding quantities of static information, like listing every planet in the StarWars realm, or knowing the exact day of the week for a certain date. In contrast, relative knowledge and dynamic situations can very difficult indeed – in other words social communication and understanding the perspective of others.

At times I have heard the term mild autism used to describe someone, and I get that autism is considered to exist on a spectrum, but I also understand that to have the diagnosis, the features that impact the individual have hit a kind of critical mass. If that is the case, then it seems to me that we might consider looking for the commonalities with these kids. The words high functioning or mild autism seem to imply that they are less impacted by the core challenges of autism- and for these children (those with HFA and Aspergers), I cannot agree that they are less impacted.

Now, before I get people upset with me, or I am accused of being insensitive, I must agree that there are children who face more severe challenges when you consider sensory issues, language development, self-regulation, and intellectual ability, etc. However, I am not working to suggest that these children and their families do not face enormous daily challenges and obstacles. Rather, my goal is to increase autism awareness and social understanding – not to compare the challenges of individuals.

Educators understand that all children are different and yet it can come as a surprise that students with a similar diagnosis can appear so vastly dissimilar. This can even shift and change for a particular individual on the Autism spectrum: an intervention or strategy can work one day – but not another – or in only one environment – or with/for only one person. Additionally, the strategies that create success for one child do not necessarily work for another, and strategies that work for a non Autistic or neurotypical student may not be effective for a student with ASD. The world often comes at these students very unevenly – and their responses can seem uneven as well.

What I want to explain is that the children on the Autism spectrum, who may not seem so obviously impacted, are facing challenges which may not be easily seen or understood. The children I am noticing struggle with invisibility and with being misunderstood in this way are the ones with the high functioning label. Others may not understand the depth of their differences, and that these children are not merely being melodramatic, or manipulative, but that they are struggling with handling the social environment. They have the same challenges with perspective-taking, social thinking, joint attention, etc. as the child with with limited language – being articulate does not mitigate these challenges.

School can be stressful, and it has been my observation that it is precisely these kids, the ones who approximate typical, who are most able to see what I call The Gap. They are aware that there is a difference between them and their non Autistic peers. This awareness, combined with a multitude of other factors can set the stage for difficulties with anxiety, emotional regulation challenges, and depression, to name a few. (This is a topic for another post, perhaps.)

Our teachers need support in understanding the challenges faced by students on the Autism spectrum.  There is an opportunity here to consider a shift in paradigms: an adoption of a stance in practice (not just theory) that recognizes that a child can be smart and still have challenges, and that in essence we need to be building a cognitive and a social ramp for our children with diverse needs on the Autism spectrum.

________________________________________________________

30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism, (2011)

Images:
Access Sign – Google Images
Different Think – www.macdesktops.net
About these ads

About Leah Kelley

Leah Kelley, MEd., Educator, Parent, Speaker, Social Justice Activist. Writes blog: 30 Days of Autism. Projects support social understanding & neurodiversity. Co producer of documentary: Vectors of Autism. Twitter: @leah_kelley Pinterest: http://pinterest.com/leahkelley13/ Facebook: https://www.facebook.com/pages/30-Days-of-Autism-Leah-Kelley/154311301315814
This entry was posted in Aspergers, HFASD, Neurotypical, promote social understanding and tagged , , , , , , , , , , , , . Bookmark the permalink.

45 Responses to Approximating typical: navigating the label “high functioning autism”

  1. CG says:

    You raise some excellent points. Lots to consider here.
    Thank you for your thoughtful post.

  2. Cole says:

    I despise the term high-functioning. Everyone is functioning–some just have a greater variety of skills at their disposal. I (like you) have a child on the spectrum and work with individuals on the spectrum for my day job. I steer clear of the term high-functioning because it implies that there is less of a need for services, which is certainly not the case. Great post!

  3. Margo says:

    School is a difficult place for those that are not in the inner realm of the “bell curve” of normalcy. Autism Awareness Month and your blog have a helpful glimpse into your beautiful and frustrating and amazing world. Thank you!

  4. Leah Kelley says:

    At those times when it seems possible to use the term ‘high functioning’ I have been inserting the phrase ‘well-functioning’ which to me seems more descriptive and fitting. I may alter my attitude toward this term as well, but for now it seems more appropriate because it focuses on the skills and behaviour, and does not seem to lead to the same judgment or assumption about ‘how much the person is struggling’.

  5. Elizabeth says:

    My daughter is “high-functioning” and in some ways it is harder than having a kid who is obviously not functioning well. She appears as neurotypical as anyone, with excellent verbal skills. It’s hard, for example, at the grocery store when she walking and talking with me, holding my hand and then a stranger swoops in, says how cute she is, touches her and starts asking her questions. Then she’s suddenly not so high-functioning. The problem is, everyone just assumes she is rude or that I am a bad parent. It is so frustrating.

    • Heather Keeton says:

      I would think that when this happens, it presents a great opportunity to educate that person about autism spectrum disorders-you can keep it brief. I look for opportunities to educate the public. I guess that is why I am an autism advocate/autism nanny (and have a mother and sister who is high functioning). Diversity is beautiful among children especially. Of course you are not a bad parent. Show that you have to be a different parent. I have the reverse roll of explaining why my mother is different, because of her autism. But on the other hand, other people don’t believe me when I talk about my mom’s autism because she is so high functioning.

  6. nujusmom says:

    Well said Leah! High functioning is absolutely a misnomer in this world. I live with similar challenges that Elizabeth faces. Well functioning would be far more appropriate for our special little ones.

  7. Yes! Great points and important to discuss. I imagine we will have to do a lot of navigating of all of the terms given to autism at this period in time.

  8. Pingback: Had it up to here « AutisticSpeaks

  9. Beth Arky says:

    Excellent post! You’ve summed up our situation perfectly. As I like to say, my son, 8, looks typical–until he *does* something. Then come the stares, the judging, the lack of play dates and invitations. It has also made school placement extremely difficult. It took me a long time to understand that bright kids with “negative behaviors” are not welcome in most settings, public and private alike. An aside: I also dislike the term “low-functioning” because of how condescending and small-minded/mean it must sound to those individuals and their parents. I’m also very interested to see the reaction when the new DSM terminology comes out.

    • Heather Keeton says:

      I can’t wait to meet you in person, as well as Jack, Kirsten and Alex at the ASPEN conference in NJ in April. I will be hanging out with Scotty Holman.

      And thank you so much for your 2nd book! I am only a forth way through, but the information is so invaluable. The info. is like gold to me, as I teach autism classes in my area as a public service to raise awareness. (I am also a special needs nanny).

      Also, my mother is “high functioning” autistic, (only discovered this 3 years ago) so I have been re-evaluating my entire childhood based on what I know now about autism. Why she never hugged me-I have to adjust my thinking that yes, she did really love me, but just didn’t show it in a typical way. I could go on and on.

      As if that is not enough, my sister and her daughter is also high functioning. And I was married to an undiagnosed aspie for 9 years (who ironically has very similar talents as you in mechanics, computers and electronics.)

      So my life is autism. Thank you for your books JER!

  10. Heather Keeton says:

    Curious to know from parents with “low functioning” autism, how they feel about their child being referred to as “severely autistic”.

    We have got to think of better terms I guess, but then will we all agree on them?

  11. Amy Knox says:

    Terminology doesn’t bother me. I’m one of the rare parents that doesn’t care what you call it, It is what it is … My son is non verbal and moderate to severe autism. I just don’t see why people get so worked up about degrees of autism. Each child with autism faces their own challenges. Many parents of high functioning kids think they have it bad because of the emotional stress of kids that seem to “pass” but have sensory issues or difficulty socializing. As the parent of a child who can’t communicate at all, tantrums often, and is unable to function at all without constant supervision it is easy to think…”who are they kidding”? I wish my kid was “just a little awkward”! But we can’t think that way it tears our community apart to divide the spectrum. It is a broad spectrum and every “level” of autism has distinct disadvantages and each child has strengths and weaknesses. We have to band together to help our kids receive what they need.

  12. bowderlp says:

    My brother and I would have belonged on the “autism spectrum” if such a thing had been discovered in the 1950′s. He was on the more severe end, having also problems with ADHD, etc. and social and academic difficulties. He disliked school because of teasing and name-calling, and repeating grades. He didn’t learn to read until his 2nd time in 7th grade, when purely by chance he was assigned to a wonderful teacher, Mrs. Reed – (honestly) who took the time to figure out how his way of learning was “different” from the average. Although he is still a terrible speller (has everything proofread by family members), he graduated from Vocational School, and has had a successful career in building and contracting, has been a Volunteer Firefighter and Fire Chief in his town, is a first responder in climbing and ice rescues, and is a free-lance excavator, pole setter, and lighting rigger for large concert venues. He’s been married for 24 years, and has a son who is a robotics ace. Pretty good life for one who started so slowly.

    I myself would have been a “high-functioning Asperger’s child.” I loved school, learned to read at age 3 1/2, and despite bouts of extreme shyness, depression, anxiety and panic, (which have never entirely disappeared), made a so-so adjustment to social situations, got good grades, and found my niche in music and education. Aside from stage fright, which prevented any kind of solo or conducting career – (“they have an App for that now”) -I have been a life-long orchestra and band member, taught music for over 40 years (all ages & levels, and 15 years as a teacher of Music History at the University level) with a Master’s Degree in Music, and also earned a Master’s degree in Library Studies. I had a very happy marriage, and am helping to raise my 3 lovely (bonus) grandchildren. My “alter ego” is an outdoorsy person – I love camping, hiking, road trips, and am handing many of these life-skills down to my grandchildren. So, another success story. I hope these will give parents hope for their “different” children.

    • Leah Kelley says:

      Thank you so much for sharing your perspective and experiences. These are the kind of stories that do give families and others hope. It is rewarding to hear that you and your brother found paths that brought you fulfillment and that you were able build your careers and lives using your interests and areas of strength. I have hope that my child will find just such fulfillment…

      I suppose that is what we wish all of our children.

      If you are interested in contributing this story – this would be a lovely post to share on our Autism Positivity Site!

      I hope you will be back! Comments are like chocolate! Hugs!!

      • bowderlp says:

        I would like to post my story on “Autism Positivity Site. but am not sure how to do it. Hints?

  13. Leah Kelley says:

    Fantastic News!!
    Here is the link: http://autismpositivity.wordpress.com/submit-an-entry/ The instructions are on the page. You can just cut and paste your comment from here – or alternatively – write something new. But I think what you have written is perfect.

  14. Ms.Colorfulpast says:

    Thank you, thank you, thank you! You raise some excellent points in your article. So often it seems that our needs get swept under the rug because we are so good at things like memorizing things by rote…

  15. Celeste Spangler says:

    Thank you. As one who is “high-functioning” it has always been a struggle to have anyone understand that just because I push myself hard to handle every-day things well, it is exhausting and not easy. It does not come naturally, and I am not a rude, evil person because sometimes I reach my limit and snap.

  16. Anabelle L says:

    Well written! The same information also applies to adults with Autism, myself included.

    Thanks for putting these words out into the world!

  17. Absolutely excellent. Spot on and so well articulated.

  18. anautismdad says:

    I love this. I read a blog post once called, I think, “The Low Service of High Function.” My wife describes my son as one foot in the autistic world and one in the NT world. He fits into neither completely and the choices are more, I think than if he fitted completely in either world and therefore harder and more risk filled,

  19. Absolutely! I’ve always described it as “no man’s land”, because the services and support aren’t for the things you need or at the same place you’re at, but yet trying to keep up with the regular world can be difficult to downright impossible. It can really suck.
    I’ve had a great fear of fire alarms (sound related) and what makes it suck more is knowing people don’t always see I’m an aspie. I don’t take pains to hide it, but I also don’t believe in playing it up. So if the alarm goes off and I get really afraid…and really embarrassed. I am in fear of the sound, but I also am afraid people will think I’m a complete freak or being a drama queen. When really, no I’m just freaked out. I know they have a purpose. I don’t want to be afraid. I’m trying to work on it, but it’s so deeply entrenched (and has been for so long) it’s easier said than done.
    Case in point. I also am afraid of bunson burners and flames in a building equipped with fire alarms. I *know* they probably won’t automatically set them off, but I still *worry* that somehow it will. Chem professor decides to do a little demo of I can’t even remember what, and matchpaper. The flame literally went *woosh* and scared the crap out of me. I stood in the doorway trembling.
    After class a guy said to me “what were you burned as a kid or something?” He turned out to be a jerk anyway, but I wouldn’t be surprised if others thought “what’s wrong with her?” He just happened to say it outloud.

  20. Bobity says:

    This would be fantastic if it replaced references to children with people. Children grow into adults and the problems are still the same. Everything stated here still happens in adulthood only there are no supports anymore.

  21. vivizara says:

    I love this post! I have long been struggling with the concepts surrounding HFA and “mild autism” – sure my son does not have learning difficulties and there are many children and families struggling with difficulties more profound than his, but the areas in which he /is/ impaired, he totally flounders. The difficulties he faces are not mild and there is no way his social interaction could be described as “high functioning”, however good his speech is, or how able he is academically. Well done for putting a complex concept into words.

  22. Excellent stuff. Thank you for tackling the issues of ‘high functioning’ and ‘mild autism’. We struggle with those all the time. I shall be sharing this post widely!

  23. Amy Boyden says:

    What a great article! It really sums up what I tried to convey to my son’s school—before we jumped ship to a place that gets it.

  24. Sue says:

    Definitely agree with you. Too many times people have said M. cannot be on the spectrum because …. or they have let her down because they thought her challenges were not real. Add in the group who failed to recognize that she could still remember word for word the bullying that happened years before and could even tell you what she was wearing and exactly where they were at the time, making it seem like it occured yesterday.

    Needless to say she has been let down more than any child ever should be. The new head of the school has finally agreed to a meeting. I am hopeful I will get an apology for her permanent record that explains the school’s failures.

    • Leah Kelley says:

      Thank you for your comment Sue. It sounds like M has really had a difficult time. Our kids can sure have memories cling to them with details that can be painful and can make it challenging to leave an experience in the past. That is a real complicating factor with bullying – it can continue to exist and hurt in the present tense – especially when there is such perfect recall of the tiniest detail. I hope that the school is able to support you and your daughter with greater understanding and that your meeting goes well. ((Hugs))

  25. Pingback: High or low functioning autism, we’re all in the same boat | HighFunctioningMomism

  26. colinb897 says:

    Leah. Respect and affection for authoring such great perspective.

    Leah, you say, “There is an opportunity here to consider a shift in paradigms”. I wonder whether one useful paradigm shift involves: conceptually depersonalising both the autistic and the social; reconceptualising autism as a developmental outcome, rather than a cause of developmental outcome; reconceptualising the autistic and the social as life-forms which tend to be in tension.
    An obvious immediate difficulty is a level of abstraction. It’s more straightforward, for a variety of reasons, to talk about things in the terms of an existing paradigm; even if that paradigm makes it difficult to talk about these things. I think that this is the genre of difficulty that so called high-functioning autistic persons encounter. Your autistic sensing and cognition readily takes you beyond the socially endorsed paradigms: but if you so go beyond these particular paradigms, it becomes difficult for others remaining within them to go with you in your autistic sensing and feeling and thinking; so you get caught up in this tension of being able to work well-enough within socially endorsed paradigms, but seldom getting opportunity to act out the paradigms of your own native sensing and feeling and thinking. If you so-seldom can voice and act out of your native autistic paradigms, then there is massive developmental effect: self-expression and self-realisation in terms of that self-expression, is hit hard; and this hit-hard development may tend to manifest as what gets collected as autism (development gone wrong, because of social mis-reception of the autistic).
    The horizon of aspiration for the person labelled in terms of high-functioning autism, is not in my view orientated to the social, but rather to the autistic. The social is being dealt with well-enough, and the label high-functioning indicates that. The autistic is not, in developmental terms and for a person so labelled, getting a fair crack of the developmental whip. It’s the autistic that this person needs to more open up, firstly as a private realm in which personal integration is to be had, secondly as a ground from which to come back strongly in renegotiating relationship and interaction with what is social.
    To go back into abstraction, we need to then review the social and the autistic impersonally. The social is a form of joint-occurring which emphasises what is collective: you can have individual membership of a collective through subscribing to its social. The autistic is a form of individual being which so emphasises individuation, that developing autistically can take a person away from the social of a collective: one of the things we are then currently exploring is just what joint-occurring the autistic allows for; it then proving perfectly possible to have joint-occurring on an autistic basis (and this the precondition of sound autistic development; this the treasure currently being won across autistic-affirming parenting).
    The problem then is, that autistically and socially grounded joint-occurring, as things currently stand, have bases so different that they are in a tension which proves difficult to manage. Difficult for those on both sides of an autistic-social. That difficulty grounded in how identity plays out in human occurring. Those more on a social side of things identifying with that social; those on an autistic side of things identifying with what is autistic. Resolution requires securing some slack across this identity issue; and that’s where reviewing the autistic and social impersonally comes in.
    We can’t really overemphasise the life-difficulty involved across this identity issue; and I think this life-difficulty is most encountered by those who end labelled in terms of high-functioning autism. They are competent in, and not dis-identified from the social. They are autistic but not allowed, by a contextualising social, to act out and develop across an autistic aspect to themselves; an autistic identity is socially hog-tied. Anxiety is inevitable, and likely to be all permeating. Meltdown is inevitable, as squaring autistic-social circles is subverted across identity-components in fundamental-tension. Managing meltdowns in terms of aspiration to voice and affirm the autistic, becomes crucial, but obstructed by everything contextual.
    The more positive take, is that self-affirming persons labelled in terms of high-functioning autism, are positioned to sit on the boundary between (see Hugh Brody of “Maps and Dreams” fame for what it means to sit on boundaries) the autistic and the social, reviewing both the social and the autistic from that viewpoint; where that will yield up the fresh paradigms we require. Paradigms which have to be won and lived-out by persons; paradigms which have to be abstracted from this living-out, in order to communicate them across an autistic-social tension.
    There’s then a lot to be said around what is involved in this last project of abstracting; and again those we label in terms of high-functioning autism are the ones we have to support so that that they can implement this project.

    • Leah Kelley says:

      Thank you, Colin.

      Your comment, as always seems to have me perched on the very edge of my understanding – and I am ever so grateful for the gentle push of my capacity to see the complexities inherent in supporting others and in honouring their natural and native autistic capacity.

      This differentiation between the social interfacing and the autistic expression of self is important. I think I am beginning to understand the balance that needs to be in place. Thank you for being so patient as I am further developing my own cognitive process and understanding around this.

  27. Erin says:

    The psychologist who diagnosed me is also my children’s psychologist. She never uses the term “high functioning” or “low functioning”. She told me that I can function, but am highly impacted. The only person who has called me “high functioning” is my mother, which has always struck me as strange. She doesn’t see my son as “high functioning” even though is he very much like me. She sees my daughter as functioning even lower than her brother, because of her bipolar and developmental delayed. I am not sure if she never realized that I struggled growing up or if she just didn’t want to admit it. For much of my life I did feel invisible. I didn’t know how to ask for help and no one seemed to notice that I needed help. I was seen as a quiet person, an introvert, a loner, shy, and even “stuck-up”. I wasn’t seen as I really am. My mother knows my son struggles and she knows my daughter struggles, but it took a long time to get her to admit it. Since neither of my children are behavior problems at school and both work very hard, their learning disabilities and lack of social skills are often over looked. They would be invisible if I didn’t push for the help they both need.

  28. Renee Salas says:

    Haven’t the slightest idea how I missed this since I subscribe to your blog?!! LOVE this post and couldn’t agree more. I will be sharing it on FB immediately. Hugs to you <3

  29. Pingback: High and low | autisticook

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s