As an autistic person, I have multiple facets to my identity – just like everyone does. One of those facets is that I am also a parent. My son is autistic, and I know what it is like to sit with professionals and be told how limited your child is. I know what it is like to receive a diagnostic report that includes horribly negative words about deficits, and I know what it is like to have to explain that to other people in your child’s life including teachers and family members.
So, based on that, I would like to offer some advice to parents who have gone through this process that I wish someone had given me when I was there.
Take the diagnostic report, full of the language of the pathology paradigm, and reword it to reflect the neurodiversity paradigm.
How?
The best way that I can explain this is to give you an example:
From a report:
X appears to have impairments in communication and social interactions. In addition, he was reported to have several restricted and repetitive behaviors. Specifically, he was noted to have difficulties engaging in a social conversation, high pitched vocal tone, impairments in use of eye contact, difficulties socializing and interacting with other children, and limited emotional reciprocity. He also collects rocks, has an inflexible adherence to routines, displays heightened sensitivities to light and loud noises, and finds it hard to cope with changes to his daily routine.
No, that doesn’t say anything positive at all!
So, how can I reword this to say something positive?
X has differences in his communication style and social interactions. He prefers to engage in behaviors that are comfortable for him. Specifically, these include conversations that remain on topic and relevant to him. He prefers not to make eye contact because it is uncomfortable for him, and he prefers interacting with children who are older or younger than him, rather than only interacting with his age mates who can be less predictable. He loves collecting rocks because he is interested in the different shapes and substances that rocks are composed of. X prefers predictability in his daily routine, and enjoys being in sensory friendly environments.
Why?
Why should you do this? Why go to the effort of rewriting a professional report? Because you are going to have to introduce your child to teachers and therapists and you’re going to have to do that more than once. When you do, you want to do that from a place of strength rather than a place of weakness. You want to highlight your child’s unique potential rather than place limitations on them, and you don’t want to have to confront all those negative words every time you do this. This way, you have the words you need to ensure that your child receives the support that he/she needs without trading in his/her dignity.
As an autistic person, I wish that my parents had accepted me for being me, rather than trying so hard to make me into their version of me. Their efforts to make me into their version of me were unsuccessful but it did result in me feeling as though there were things wrong with me. For my son, I want him to be able to be him, without having other people give him the message that there is something wrong with him. This way of introducing him to people who will work with him sets the tone from the beginning that you value I value my son for exactly who he is and I will not allow them to try to change him.
Not autistic. Person with autism, always a person first.
ReplyDeleteGood examples though.
chavisory said...
DeleteActually, Bobs Burgers, most of the autistic community has come to prefer "autistic" over "person with autism."
Autism is intrinsic to who we are. We get what "person-first" language is intended to do and honor the preferences of anyone who prefers it for themselves. But much of the autistic community is pushing back against the idea that in order to see us as people, you have to separate us from our autism. It doesn't work that way.
You'll notice that the author of this piece is herself autistic, and has chosen this language for herself. That's a choice that she is allowed to make. Thanks for understanding.
You do not get to dictate how other people choose to identify. If we choose to call ourselves autistic, Autistic, Aspie, or a reclaimed slur (Stella Young's use of 'crip', anyone?) then that's what we are.
DeleteNot autistic. Person with autism, always a person first.
ReplyDeleteGood examples though.
Actually, many people prefer identity-first language to person-first. You can read more here: http://autisticadvocacy.org/home/about-asan/identity-first-language/
Delete"Always a person first"... that says more about you than it does about us. That in order to remember that we're people at all you have to emphasise the fact in the language you use.
DeleteAll this "person first" trend does is shoe-horn as many words between "person" and "autism" as it possibly can. As if by distancing us from our neurology linguistically you can somehow distance it from us practically. It makes no more sense to refer to us as "person with autism" than it does to refer to someone as a "person with femaleness", or a "person with blackness".
You don't have the right to tell autistic people what to call themselves. Assuming you have that right is the height of arrogance, and won't win you any favour amongst actually autistic people. Your condescending correction leads everyone to the conclusion that you don't have a clue about the autistic community, nor do you care to be educated by them.
"Good examples though", do you even know how you sound? It sounds like "Nice try at knowing stuff about autism, but leave it to the experts, people without autism! *pats on head*" I strongly suggest you read what other autistic people are saying to you and reconsider your attitude towards us.
You don't get to tell people how to refer to themselves. Autism is central to how we experience the world. We perceive autistically, process autistically, and behave autistically. It's autism all the way down.
I knew that when I finally started writing that someone would be too quick to dismiss what I had to say by rushing to the comments section to insist that I use person-first language.
DeleteI am a person. I am an autistic person. My son is a person. He is an autistic person. Both of us have made the choice to call ourselves autistic rather than say we 'have autism' or we're 'with autism' like it's a separate thing from us that we can occasionally leave behind.
But, knowing that this would happen, my first blog post on my personal blog addressed this: http://un-boxedbrain.blogspot.com.au/2015/07/the-word.html
I'm a person first .... an AUTISTIC person first.... I don't need to be told that I'm a person: I know I am. I'm an autistic one.
Delete'Person with X' is grammatically clumsy and also tends to negate the fact that autism (whatever it actually is!) is pervasive. *Person who has epilepsy' is pretty correct: you can get rid of the epilepsy - meds or neurosurgery - without changing the person at any fundamental level. Autism ... well, 'being autistic' does not work like that.
Wonderfully written I too am all for positive attitude instead
ReplyDeleteWonderfully written I too am all for positive attitude instead
ReplyDeleteOf course, then there's the next question to ask.
ReplyDeleteWhy do professional reports have to be written in the negative pathology model in the first place?
There are ways to document challenges and impairments (I do believe impairment is a useful term and concept - as a disabled/autistic person, I certainly have impairments) while also documenting strengths and respecting individuality and neurodiversity.
I know I don't do as good a job of this as I'd like. There is some language I have to use to justify a diagnosis that in turn justifies accommodations or other services. I have to report test scores, for example, and I have to describe communication challenges or impulsive behavior or difficulty using a pencil in the way that is expected at school. Otherwise, no one will pay for the child to come see me in the first place and I loose the opportunity to spread a little neurodiversity model around!
But it is possible to write a professional report that is much less pathologizing than most that are currently written. I've been starting with the idea that we can separate out actual impairments from differences that are non-impairing or are in fact strengths. Communication challenges are often impairments. But stimming, is generally non-impairing until others turn it into an impairment, and can be mentioned in a neutral or positive way.
That's something I'm trying to get to catch on in my field. It's been slow going but I have hope.
This is really helpful. I'm an ASD diagnostician (OT as part of a multi-disciplinary team) and parent to two autistic children, so I know what it's like to experience a diagnostic assessment and feel like the focus is on deficits, but I also see why the typical diagnostic reports are worded in medical jargon and are addressing diagnostic criteria for an audience of medical practitioners and education bodies. Our team always focus on the child's strengths but I think we could be changing the wording as you have here, to further highlight the child's abilities and "different not less" way of being! I will be sharing this with my team.
ReplyDeleteI am also trained in developmental diagnostics (I'm an educational psychologist by training). I am also the parent of an autistic child. Her mother is autistic, and so am I.
DeleteFor me, when I'm writing an assessment report, my job is to present an accurate picture of what is going on with a person. This means that I do not sugar-coat any difficulties: I have to make it clear that these difficulties exist - if I don't, the person is never going to get support to deal with them. And, if that happens, I will have let that person down in the most unethical manner possible: by lying about the very real problems they face in everyday life.
It's one thing to focus on strengths (provided that one does not whitewash over the difficulties), and it's another thing entirely to make out that there are no difficulties; and - let's face it - why would anybody be in for a diagnostic assessment if there were no observable difficulties being experienced by that person?
We were trained to write accurate reports:
Client's personal details;
Reason for referral;
Tests used (with reasoning);
Test results;
Poles of poorest performance: problems and difficulties reported and their relationships to the results of tests;
Poles of best performance: strengths and advantages reported and their relationships to the test results;
Psycho-educational diagnosis (if warranted; this must be essayed properly and clearly wrt criteria);
Suggestions for immediate implication as ways to help the person to either work on difficulties, or to find ways to circumvent them¹;
Ways in which I can be available for further consultation.
To do otherwise would be unethical and unhelpful.
¹ e. g., it would be insanely stupid to recommend hard and prolonged practice for a dyspraxic child whose writing is affected by that dyspraxia... you recommend use of a word processor instead, and you make recommendations for dictaphones to be used; occasionally, it may be worthwhile trying to find ways to increase clarity of hand-written work - but this will not improve things much.
Well said David. Your beliefs echo my own (I am also autistic).
Deleteamen, and thank you.
ReplyDeleteamen, and thank you.
ReplyDeleteBy the end of my very first team meeting for my son I was overwhelmed with the long list of issues. I remember asking a simple question: Does he do anything right? I wish I'd read this way back when.
ReplyDeleteEarly buzz about Silberman's new book introduced me to the neuro-diversity movement just as we were receiving our 6-year old's Asperger's diagnosis. I have extremely cautious attitudes towards things like medication and ABA, as I don't want to quash my son's him-ness. So your piece really speaks to me, particularly this line: "As an autistic person, I wish that my parents had accepted me for being me, rather than trying so hard to make me into their version of me. " My dilemma is how to balance this with the need for my son to be able to attend school successfully? My son's biggest challenges, as is often the case with Asperger's, are behavioral and social, including physical aggression towards his peers, teachers, and us. And while I'm trying to see those moments as the tip of the iceberg-- as in, I need to look below the surface and see what's causing them-- the constant anxiety about being expelled from his private Montessori school IS oppressive.
ReplyDeleteHi Amy!
DeleteFirst, I would likely second-guess the conclusions that your son's biggest challenges are behavioral and social. Those are often the superficial features on which autism is identified, but they are often not the core features of autism as autistic people experience it, and often have roots in other issues, like physical discomfort, sensory or emotional overload, and language/body language usage and comprehension issues.
If physical aggression is an issue, we actually wrote a post addressing that, about what kinds of things are often behind episodes of aggression in the experiences of both ourselves and many autistic people we've known.
http://wearelikeyourchild.blogspot.com/2014/05/a-checklist-for-identifying-sources-of.html
As for attending school successfully, a lot of factors go into that, and many of them can't only be chalked up to "autism" or how much your son needs to be changed. It depends on other people, too--his teachers and peers and how well they understand and are willing to accommodate what he needs, whether the school environment is working for him or against him, etc.
Most Montessori schools are private, I imagine, but if he's in a public school, his educational rights are protected by the ADA and IDEA laws, and he's entitled to an IEP (and possibly also a 504) plan laying out the adaptations to which he is *entitled* in school in order to succeed there.
There are ways in which we have to develop coping skills, of course, but there are also ways in which other people can learn not to work against us or sabotage our chances. So I would make sure not only that his specific challenges with school are being identified and addressed, but that aspects of the school environment that are maybe aggravating the situation are being identified as well. It may be that things can be helped there, or it may be that he needs a different learning environment.
Thanks for your reply! (and especially the link).
DeleteI agree that behavioral and social challenges are "superficial"-- they are indeed the external manifestations of the types of issues you listed (which is what I was trying to convey in my poorly explicated iceberg analogy).
I try to be very conscientious about not pursuing "interventions" that seem aimed at turning my son into some imagined non-autistic version of himself-- as I believe that his autism is intrinsic to who he is, which is a pretty awesome little dude. Stripping him of his autism, were it even possible or desirable, would strip him of himself, and that would be a disservice to both himself and to the world (to wax philosophical for a moment). But I do want to "help" him in the ways that I can.
We do have an IEP from our base school in our county, but we have been advised by every psychologist, psychiatrist and private OT that we have interviewed, as well as by exceptional child (special ed) teachers (both current and recently retired) and other mainstream teachers that we know, to keep our son out of our county's public school system as long as we can. And I have heard so many horror stories from moms who now homeschool who fought with our local system for the IEP to provide what they really need (or for the teachers to actually implement the IEP) or had so many school changes. Add to the mix the need to fight for traditional calendar over year-round (not to mention the less than stellar performances of our "neighborhood" schools, or the inadequate funding for classroom aids, or the sometimes lack of training of one-on-one aids-- if you can even get one approved-- or the extremely high turnover in EC in our county)....well, I'm off on a tangent. Irrespective of the law, I don't have faith in my local public school-- nor in my county in general-- to give my son an educational environment that serves his best interests.
But you are right about aspects of the school environment aggravating the situation. Ultimately, our option to remain at the Montessori school required hiring an aid and committing to a minimum of 4 hours in-class ABA weekly. In the end, we decided that the busy beehive atmosphere was not the ideal learning environment for him at this time.
So we're in a different environment-- one for kids whose challenges manifest as behavioral or social rather than cognitive (though not all of the kids are "on the spectrum"), with a therapeutic approach (the goal being to help him develop coping skills in an environment that strives to minimize the aggravating factors). His aid is amazing-- she makes it worth every penny. And no-one is pushing us to medicate (nor do they "do" ABA).
And I also dropped the OT we were seeing. She was too unresponsive to his likes and dislikes, and despite my clearly stated objective of working on sensory processing issues and helping him recognize his body's cues and his own emotional states (as recommended by the OT who did the initial eval), she seemed focused entirely on training him to obey her.
Mostly, I see my son's challenges as a response to or manifestation of anxiety he is experiencing, and I'd like to help reduce that anxiety. I'm just trying to be careful to not cross the line between helping him manage his anxieties and trying to simply manage HIM. Does that distinction make sense?
"I have extremely cautious attitudes towards things like medication and ABA, as I don't want to quash my son's him-ness"
DeleteIf there is anything presenting that would improve with the use of medication without making him a 'different person', it is usually a good idea to go with that: I don't know a single person who has AD(H)D who doesn't function better on medication than off it. Medicating for autism, though, would be stupid: nothing would address the main areas of difficulty that form the basis for the diagnosis... autism is not medical - it is developmental. And, because of this, the best ways of working with an autistic child/adolescent/adult will always be educational in nature.
When Lovaas was advocating the use of ABA-validated techniques, he was doing so from a psychoanalytic perspective: the idea of 'building a person inside an empty shell' was pretty much how he stated the aim at the start of it. Autistic children are NOT, however, non-persons ... so one doesn't need to build one inside an emepty shell. The shell isn't empty, and there's a person in there who needs to learn skills that s/he can use in order to maximise his/her dependence on other people. That is the current focus in ABA-validated work, as opposed to trying to change who a person is at a very fundamental level.
"And while I'm trying to see those moments as the tip of the iceberg-- as in, I need to look below the surface and see what's causing them-- the constant anxiety about being expelled from his private Montessori school IS oppressive."
I can imagine that it would be very oppressive. Behaviour analysts would tend nowadays to see any sort of challenging behaviours as some form of communication - they'd say he's trying to tell what he doesn't know how to tell. They would suggest a functional behaviour assessment, with the aim of finding out what elements of his environment might be the most likely triggers and maintenance factors for this behaviour, and them would work on the design of a behavioural plan to give him much more useful and less-anxiety-provoking ways of communicating what is going on.
Those behaviours are indeed the tip of the iceberg and you do right to try to see what's under the water regarding these issues. A good behaviour analyst would be very helpful in that matter.
I love this. I am an English professor (rhetoric) and the power of language choices is very much in evidence here. I was very distressed at the report my daughter received--it pathologized who she was, her interests, her sense of humour, her core personality and way of seeing the world. My daughter herself knows that she doesn't have the skills to make friends the way she wants to, and that's a goal she set for herself. On the other hand, she doesn't see a problem with being 9 years old and only interested in stuffed animals and learning about wild animals while the other kids have more 'mature' interests. That's not something about herself she wants to fix. But both are flagged as "autistic" problems in her report.
ReplyDeleteIdentity first language has helped her be proud of who she is and how she's different; the diagnostic report makes her feel weird and broken for her neurodeviance.
Why would you show your child the report professionals have written about her, which is surely only intended for other professionals to support her?
DeleteThank you, I wonder if reports are written differently in Canada. I have never read a report on my son that doesn't discuss his strengths or make mention of how wonderful he is.
ReplyDeleteThat being said; I love how this report was framed in context.
I'm autistic and parent to 2 autistic children. I actually think it's correct to include the deficits within professional reports precisely because those are the things the person needs support with. Those supports are the things that allow the person to function better and (should) mean they are getting the environment that suits them anyway. The more autism is watered down as 'just a difference' (Silberman anyone?) the more we lose our identity and uniquness, much like the crap that makes my blood boil "everybody's somewhere on the spectrum".
ReplyDelete