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On Writing Masking Goals for Autistic Middle School Girls – Stop It!

Cite this article:
Roberts, J. (2020, August 13) On Writing Masking Goals for Autistic Middle School Girls – Stop it! Therapist Neurodiversity Collective. Therapist Neurodiversity Collective. https://therapistndc.org/masking-goals-autistic-middle-school-girls/

Citations:
Schuck RK, Dwyer P, Baiden KMP, Williams ZJ, Wang M. Social Validity of Pivotal Response Treatment for Young Autistic Children: Perspectives of Autistic Adults. J Autism Dev Disord. 2022 Nov 24. doi: 10.1007/s10803-022-05808-4. Epub ahead of print. PMID: 36427175.

DeThorne, L.S. & Searsmith, K. (2020). Autism and neurodiversity: Addressing concerns and offering implications for the school-based speech-language pathologist. Perspectives of the ASHA Special Interest Groups, 1-7


This past school year I inherited IEP goals for a middle school campus with two autistic adolescent girls on my caseload. One of the two girls had four goals for eye contact. Four! Both had scripting social skills goals and social-behavioral goals Here is just a sample of their combined IEP goals (Individualized Education Programs in the American public school systems).

“Under the following conditions: when presented with hypothetical situations or when available specific examples of problematic/inappropriate social interactions that were reported by an adult or peer, the student will independently recreate the problem through role-play and end the experience with a better outcome.”

(“Better outcome for whom?” I mentally ask. What if the adult doesn’t know the full story? What if the peer is mean or controlling or feels entitled? What if there are sensory issues involved, environmental factors ignored, supports not in place, bullying occurring? What if the student is advocating for herself?)

“Under the following conditions: when given scenarios of social conflicts, the student will independently demonstrate problem-solving skills by
a) identifying the problem and then
b) generating at least one socially appropriate solution/response.”

(I am just floored by this goal. Who gets to decide if the response is socially appropriate? On whose standards is the “appropriateness” based? What if the student’s feelings or personal boundaries were violated?)

“During unstructured recreational or free periods, the student will interact with peers in an appropriate manner through maintaining personal space and a respectful voice.”

A “respectful voice? Does that look like tone policing? This one’s a personal trigger for me.

Side note: Reader, I have been tone policed my entire life, having been shamed with “too sensitive,” “bossy,” “rude,” “too direct,” “too serious,” and “too inflexible” about such things as ethics. Ableist professional peers have even publicly speculated about my neurodivergence status on social media. As a result, my daily private thoughts are consumed with anxiety, round-the-clock worry about “my tone” and how it’s being perceived by others, and I grapple with real fear – Every. Single. Day. – both on social media, and in my real-life social and work environments. I even re-read emails several times before I send them, because of “tone.” And then I go one step further and re-read what I’ve just sent, sometimes 2 or 3 times or more, even though I rationally know that the email has been sent, and the reader’s perception is out of my hands. I am routinely judged by people who’ve never met me for not being “nice enough.” And don’t even get me started on “resting bitch face.”

I habitually do all of these things, and this is after a childhood, adolescence and an adult lifetime of trying to mask (without an understanding of masking), copiously mimicking my popular peers’ ideas of what encompasses “good” and “bad” behaviors, hobbies, and even aspirations. I pour over magazines for beauty and grooming tips so I will “blend” into my peers’ aesthetic standards. I rehearse what I will say before I say it out loud, and, even up until recently, I unconsciously absorbed the ideologies, hobbies, and interests of every best friend or significant other I’ve had since the 2nd grade (the grade when I became aware of what “popular” means) and made them mine. I still do these things, even after realizing how exhausting, and how futile all of it is, because no matter how much I try, I will always appear to others as “too” (insert negative assignment here) My personal experiences have shaped and continue to shape my therapy practices because I don’t ever want my students to go throughout their lives constantly second-guessing themselves as I have done and continue to do.

 

Next goal…

“During unstructured free time, the student will play/participate/share/follow directions/rules/take turns with one or two peers for a set amount of time.”

(Because when you are autistic, your free time is never really “free”.)

“During unstructured free time or during electives, the student will initiate and begin a back and forth conversational exchange on a topic of a peer’s choosing (for example, greeting and asking previously rehearsed questions learned during role-play) for 5 minutes.”

The implication is that when you are autistic, you are not allowed to enjoy your free time or electives in peace. Therapists and educators expect Autistic girls to mimic non-autistic socially expected behavior at all times, including initiating conversations and maintaining social turn-taking, often on someone else’s topic choice, during their “free time.” And here’s the biggie – when you are autistic, your peer’s choices of topic take precedence over your own.

And then there are these especially horrific little IEP goals that perfectly set up autistic middle school girls for future manipulation, exploitation, and abuse:

“Refrain from interrupting others in conversation.”

(Ever? Really?)

“Respond to teasing from peers appropriately.”

(Exactly what is the “appropriate response” when someone is purposely tormenting you, or sexually harassing you, or emotionally or physically harming you?)

“The student will appropriately acknowledge an interaction initiated by others by giving an appropriate response, either verbal or non-verbal.”

Is the expectation that autistic girls acknowledge all interactions initiated by others? What if the young female adolescent doesn’t want interaction from the other person? What if they are uncomfortable, annoyed, or even frightened by the initiated interaction?

“Will cooperate with group decisions in which the student is not in agreement.”

In all group situations? Even at the expense of her personal ethics, boundaries, feelings? Total compliance for agreement?

Often it appears that therapists feel more strongly about, and even punish our autistic female students for not behaving the way we think “nice girls” or “popular girls” should behave. We write goals for them to mask all autistic and authentic personality traits so they can appear “girly,” or “popular,’ and definitely, at all times, “compliant.” Therapists are almost always more concerned about the niceties demonstrated by their autistic female students during social exchanges than we might be for male peers of the same age. We attempt to “therapize” their autism away – forcing them to hide their real personalities and to transform into someone else altogether. We expect them to mask, and to do it well.

Autistic Masking or camouflaging refers to the use of conscious or unconscious strategies, which may be explicitly learned or implicitly developed, to minimize the appearance of autistic characteristics in a social setting.

Let’s look at the following study:

“The Experience of the Hidden Curriculum for Autistic Girls at Mainstream Primary Schools,”[1]:

“Autistic girls, particularly girls with HFA/AS, appear to develop coping mechanisms that mask their problems, such as becoming observers or social chameleons, or by internalising aggression and anxiety (Solomon et al. 2012).  This may also be an attempt to mimic the ‘assumptions that society places on the female gender’ (Faherty 2006: p12).  These emotions, however, are often only suppressed until they are outside of school, which can mean extreme behavioural differences in the girls at home and at school, with parents often assessing the impact of the diagnosis more severely than teachers (Myles et al, 2007). “[2]

Findings:
“Four key areas in which the hidden curriculum appeared to create difficulties for the girls were identified: class rules; working collaboratively; completing tasks; other interactions with peers.  In addition, a number of modifications and coping strategies were observed being used by the girls, many of which were unnoticed or not acted upon.  Finally, striking differences in the perspectives of pupil, parent and teacher were identified.”[3]

Discussion:
“The case studies revealed that all three girls experienced problems navigating the hidden curriculum in and out of the classroom.  Class rules were sometimes inconsistent, expectations were not always made explicit and comprehension was often unchecked.  This is in direct contrast to common recommendations for teachers of autistic children (Myles and Simpson 1998; NAS 2011). Staff did not always appear to be aware of the hidden curriculum, nor of the implications of it for the girls.  They were thus not always in a position to notice when something presented a challenge to their pupil.  Where rules and expectations were explicit and consistent, all three girls were successful in meeting them most of the time.”[4]

“Despite outward differences all three girls shared core similarities, notably in terms of ‘masking’ impairment as a coping strategy, in line with the previously identified coping strategies of internalising and hiding.  The girls made personal adjustments that were very discrete or that they tried to hide, and these effectively influenced the perception that others had of the impact of autism on their lives at school.  The less externalised evidence of social isolation, under-performance and anxiety in these autistic girls was overlooked, and thus their access to the curriculum was restricted through lack of appropriate support.  This needs to change if the under-achievement and mental health issues described by Kuusikko et al. (2008) and Ashburner, Ziviani and Rodger (2010) are to be avoided by these girls in adolescence.”[5]

My takeaway from this small study – we, as speech-language pathologists, need to do a much better job of educating our instructional peers on what autism is from a neurodiversity framework. We need to continually educate our peers at our staffings and IEP meetings that writing therapy goals for “curing autism” and masking does not actually make autism “go away.” We need to be able to share the research that addresses how IEP goals written in attempts to “normalize” an autistic student can be harmful:

 

We, as an entire profession, ethically need to advocate for acceptance and make sure that there are educational needs for every IEP goal and to make sure our students are educated in their least restrictive environments with equitable access to everything. If a student is accessing their curriculum adequately, if they don’t have behavioral referrals for discipline, if they are participating and passing, why does a diagnosis of autism automatically indicate “social skills training” to neurotypical standards? It’s a violation of IDEA. It’s a violation of their human rights.

This must stop.

Our job as SLPs is to make sure that supports, accommodations, and modifications are firmly in place in IEPs and that instructors are following them, even if they don’t believe the students need them (yes, I hear this frequently – student needs to “extinguish” whatever, rather than have the school support or accommodate the need).

We, as an entire profession, need to advocate for autism acceptance – because the days of “awareness” are over. “If our goal is to improve social interactions for (autistic) individuals, it may, therefore, be equally important to educate others to be more aware and accepting of social presentation differences, rather than trying to change the many interwoven factors of self-presentation that mark the expressions of (autistic) individuals as atypical.”[6]

In the study “Looking behind the mask: Social coping strategies of girls on the autistic spectrum”[7] we are provided with a glimpse of how autistic girls described their experiences in their educational environments:

“ …was often described as incommodious, provoking feelings of distress, lack of safety and rejection. Lack of safety arose from feeling at the mercy of more powerful others, broadly conceptualised as those who understood social rules. Three participants described how they experienced the school environment as predatory.

Emily: It feels like in my classroom that I’m surrounded by lions . . . I feel like a mouse and everyone else is like a giant cat or something.”[8]

Kate: I was really sensitive to everything and that was a huge stress cos [I] was like hurting physically as well . . . loud noises used to really scare me and hurt in my head.[9]

A number of participants described this sensory overload as traumatic.

Joëlle: I . . . just try to focus on one thing . . . instead of . . . noticing everything at once which is a bit sort of traumatic sometimes.

Janita: Boys aren’t as [quick] to judge, like if you say like something they don’t . . . take it as you being blunt . . . they’re just more relaxed.

Interviewer: Right. And do you find that girls might take you as being blunt often?

Janita: Yeah, like sometimes I might say something and they might think (pause) like if they said something, I’d think . . . they were being rude and then they would think I’m being rude.[10]

Participants described how sometimes they unintentionally broke covert social conventions (i.e. unspoken but widely-held social expectations such as “respecting elders”) and that this was sometimes interpreted and labelled by teachers as intentionally disruptive.

Joëlle: The teacher was like “it’s a technique that we use for really naughty children” which obviously . . . I might have come across as naughty, but I never intended to be like that.[11]

Misunderstandings obstructed the development of relationships and made them challenging. Participants could not read the intentions or meanings in others’ communication and their own style of communication was difficult for their peers to understand. Mutual misunderstandings led participants to feel very confused and anxious in social interactions.

Emily: AS is talking to another person through an intercom machine or something and somehow the wires get crossed and they get the wrong message.

Joëlle: I have to be really careful when I’m talking to her cos . . . otherwise I’ll . . . slip up or say something stupid or misinterpret it.[12]

 

Our autistic female students are constantly mimicking and copying the behaviors of their peers so they can hide their autism. We, as clinicians, teach them to do this because we were taught that autism must be hidden and masked through the therapy we provide. We are licensed, credentialed ableists, therapizing our autistic students to learn to be in a constant state of masking in order to be acceptable, to be worthy, to be liked.

Our autistic girls are masking their autistic traits, tone policing themselves, disappearing into the background so as not to draw attention to their autistic behaviors and communication styles, forcing eye contact, and vigilantly quashing their harmless stims. They hide their feelings behind their masks at the expense of their emotional well-being to please therapists, teachers, parents, and peers, all while ignoring their authentic communication instincts while essentially attempting to change the entire essence of who they are into someone else entirely, in order to “blend,” to appear “cured” and to be accepted their instructors and their peers.

Our autistic girls are struggling to be “good girls,” to meet the unrealistic and often unspoken definitions of what it means to be “popular” or even liked. It’s exhausting – mentally, emotionally, and physically. And it’s taking a toll.

Our autistic students and clients exist in a constant state of anxiety – all day and every day.

And yet, we as clinicians continue to write therapy goals that take away their self-determination, eliminate self-advocacy, attempt to change their entire personalities, “extinguish” their harmless behaviors, force compliance for ridiculous things like eye contact, rote social scripting, mandatory response to all communication attempts from others and compliance with social expectations such as “responding appropriately to bullying or not responding in anger” that even our “typical” students are not expected to meet.

Instead of tearing our autistic girls apart, shredding their self-esteem, focusing on the extinguishment of their autistic communication styles, and expecting them to change their entire manner of natural social interactions with others, why don’t we focus on:

When we build school curriculums, why don’t we focus on:

 

The following are some examples of goals I have written for autistic students on my caseload within the last school year. The goals are under the scope of pragmatic language and are academically relevant. (Note – they are not measurable as written below. A clinician would need to individualize the IEP goals and determine the standards of measurement):

The student will describe what personal boundaries may look like when they do not conflict with her boundaries or others (such as what kinds of information to share with other people, phone, physical touching, friendships, peer pressure to do things that are against the rules, morally or ethically wrong, or harmful):
a) Describe her own personal boundaries (physical and emotional)
b) Describe what other’s boundaries may look like

Student will describe
a) various emotions with newly learned vocabulary, and
b) describe some physical associations that may be associated with those emotions.

After watching a video or listening to a passage student will
a) predict or anticipate the reaction of the character independently, using emotion words to describe, and
b) state how she might feel in a similar situation, and
c state how she might react or what she might say in a similar situation and why.

When provided with hypothetical difficult social situations as encountered in role-playing with speech services, in videos, movies, short stories, and literature sources, Student will:
a) Identify the social problem (breakdown in communication, misunderstanding, disagreement, etc.)
b) Generate a communication response to solve the problem which would be socially acceptable to most audiences, without sacrificing self-determination and self-advocacy. (A socially acceptable solution could include not engaging at all until the student is in a self-regulated state.)

The student will generate possible outcomes to a social situation or problem and consider:
a) which outcome may be most positively received for the situation, and state why.
b) which outcome may be most negatively received for the situation, and state why.
c) certain situations when generating a negatively received outcome might be appropriate anyway (turning down a dance, a date, compliance with something that makes her feel uncomfortable or unsafe).

The student will demonstrate measurable progress with independent self-advocacy, including independently:
1) Asking for help when he is struggling with materials or lectures
2) Requesting modifications and accommodations to which he is entitled
2) Asking for clarification when he does not understand directions
3) Requesting break when overwhelmed or not able to self-regulate

After watching a video or listening to a passage, the student will make a prediction of what may happen next by:
a) inferring why a particular person said, felt, or did in the movie clip, video, short story, or another literary source.
b) making a logical prediction of what they might do next and state why (based on previous actions)
c) relaying his personal perspective on the same situation, and then state would he might do, and why.

As clinicians, our primary responsibility to our clients and students is to first do no harm. I encourage my fellow clinicians to keep up with current autism research conducted in partnership with and by autistic researchers, to read masking research as it’s published, to listen to autistic thought leaders, mentors, and educators, and apply this knowledge to our practices, and to advocate for our students’ and clients’ emotional well-being and for the right not have to sacrifice their identities in the pursuit of appearing “less autistic.” I would implore my fellow clinicians to educate our instructional and clinical peers, students, and parents about autistic differences in social communication and to advocate for autism acceptance. As SLPs, we are in a unique position to advocate for changes in therapy practices. I believe it’s 50% of our job, actually. We will either empower our autistic girls through targeting therapy objectives that do just that, or, instead if we keep the status quo, we will continue to do great harm. Let’s practice respectfully and empathetically, based on current research and with a neurodiversity framework of acceptance and advocacy.

[1] R. Moyse & J. Porter (2015) The experience of the hidden curriculum for autistic girls at mainstream primary schools, European Journal of Special Needs Education, 30:2, 187-201, DOI: 10.1080/08856257.2014.986915

[2] ibid

[3] ibid

[4] ibid

[5] ibid

[6] Sasson, N. J. et al. Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. Sci. Rep. 6, 40700; doi: 10.1038/srep40700 (2016). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5286449/

[7] Tierney, Siobhan & Burns, Jan & Kilbey, Elizabeth. (2016). Looking behind the mask: Social coping strategies of girls on the autistic spectrum. Research in Autism Spectrum Disorders. 23. 73-83. 10.1016/j.rasd.2015.11.013.

[8] ibid

[9] ibid

[10] ibid

[11] ibid

[12] ibid

 

Julie Roberts, M.S. CCC-SLP
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