Therapist Neurodiversity Collective

.Therapy.Advocacy.Education.

Julie Roberts, M.S., CCC-SLP
Cite: Roberts, J. (2023, April 1). IEPs, Ableist Goals, and Parents’ Rights. Therapist Neurodiversity Collective.

A neurodiversity-affirming parent’s anonymous post to Therapist Neurodiversity Collective requested information that might help them advocate for their special education student in the IEP meeting. From the information contained in the post, it appeared that the school, although possibly unintentionally, was not aware of IDEA and Supreme Court decisions, and therefore violated parental rights to meaningfully participate in and contribute to the IEP meeting. Additionally, it is clear that our public school system is lagging in knowledge and application of contemporary research evidence about autism, and as a result, the kids are paying the consequences with poor mental health outcomes. 

Links to important information for parents are provided in the article.

A woman typing on a laptop with a dog sitting at her feet.

Letter from a Parent:
I recently had an IEP meeting about my child that was full of ableist comments and actions toward him. They started the meeting by pulling over the child and asking him to look at them before stating it was the child’s meeting, not mine as the parent.

IDEA states that parents have the right to meaningfully participate in the IEP process and the United States Supreme court has vigorously protected this right.

IDEA 300.321 IEP Team.
(a) General. The public agency must ensure that the IEP Team for each child with a disability includes— (1) The parents of the child;

IDEA §1400(d)(1)(A)-(B)
“The goals of IDEA include “ensuring that all children with disabilities have available to them a free appropriate public education” and “ensuring that the rights of children with disabilities and parents of such children are protected.”

Supreme Court of the United States. Winkleman v Parma. May 21, 2007.
Parents play “a significant role,” Schaffer v. Weast, 546 U. S. 49 , in the development of each child’s IEP, see §§1412(a)(4), 1414(d). They are IEP team members, §1414(d)(1)(B), and their “concerns” “for enhancing [their child’s] education” must be considered by the team, §1414(d)(3)(A)(ii).

And, per IDEA, parents make educational decisions on behalf of the special education student until the student is of age.

IDEA Sec. 300.520 Transfer of parental rights at age of majority
 Age of Majority: If State law grants a child who has reached the age of majority under State law (except for a child with a disability who has been determined to be incompetent under State law) all rights previously granted to parents, then the parents’ rights are transferred to the child as provided in §300.520(a)

IDEA Sec. 300.322 Parent Participation                 
(2) For a child with a disability beginning not later than the first IEP to be in effect when the child turns 16, or younger if determined appropriate by the IEP Team, the notice also must
(i) Indicate—
(A) That a purpose of the meeting will be the consideration of the postsecondary goals and transition services for the child, in accordance with §300.320(b); and
(B) That the agency will invite the student;                       

When stopped and reminded of the variance in his communication styles, that eye contact is dysregulating for him, they shared personal anecdotes on how they find it to be unnerving as well.

 

IEP meeting with adults and a child at table. Child looking down.

When someone else demands eye contact from another human being it is a violation of that human’s body autonomy. Children, including autistic children, have the human right to control their own eyeballs and to self-regulate by avoiding eye contact. 

Demanding eye contact from autistic people puts them into a fight-or-flight response (activation of the amygdala).
Hadjikhani, N., Åsberg Johnels, J., Zürcher, N.R. et al. Look me in the eyes: constraining gaze in the eye region provokes abnormally high subcortical activation in autism. Sci Rep 7, 3163 (2017). https://doi.org/10.1038/s41598-017-03378-5

Many (autistic people) say that looking others in the eye is uncomfortable or stressful for them — some will even say that “it burns” — all of which points to a neurological cause.
Massachusetts General Hospital. “Why do those with autism avoid eye contact? Imaging studies reveal overactivation of subcortical brain structures in response to direct gaze.” ScienceDaily. ScienceDaily, 15 June 2017. https://www.sciencedaily.com/releases/2017/06/170615213252.htm

In addition, variation in eye fixation within autistic individuals was strongly and positively associated with amygdala activation across both studies, suggesting a heightened emotional response associated with gaze fixation in autism.
Dalton KM, Nacewicz BM, Johnstone T, Schaefer HS, Gernsbacher MA, Goldsmith HH, Alexander AL, Davidson RJ. Gaze fixation and the neural circuitry of face processing in autism. Nat Neurosci. 2005 Apr;8(4):519-26. doi: 10.1038/nn1421. Epub 2005 Mar 6. PMID: 15750588; PMCID: PMC4337787.

Throughout the meeting, they read teacher feedback forms that included information related to the child’s attention span and visual or verbal stimming. One such comment was,

“when child is presented with work, he will state he does not know how to do it and will then increase his speaking volume and immediately stop working on the assignment to look around the room. He struggles with attention to the work and requires someone to stand next to him to redirect him every few minutes back to the task but the work itself does not get completed even with the reminders. He will continue to state that he does not know how to do the assignment. When he is instructed, he refuses the help he is given. He is not self-advocating or using accommodations at this time without being instructed to do so.”

An introduction to monotropism
Jul 4, 2022 This animation was written and narrated by Kieran Rose (www.theautisticadvocate.com) and animated by Josh Knowles Animation. It was commissioned by Health Education England and produced by AT Autism and Anna Freud National Centre as an accessible 4 minute introduction to the key ideas of Monotropism, originally as part of training aimed at Tier 4 mental health practitioners (#Tier4AFC), led by Dr Pavlopoulou and Dr Moyse.

The student’s behavior is an attempt at self-advocacy. It’s not being recognized by the staff. The student may not actually know how to do the work. Instructions may need to be given to him in a way he can understand. Perhaps a model and a visual representation of instructions?

Accommodations are only accommodating if they work for the disabled person. Perhaps the accommodations need to change to ones that actually work for the student. The parent has the right to request to review the data the school used to determine that the accommodations in the place are ones that have been shown to be successful for this student.

Inertia is quite difficult for some autistic people.

“…we have found that difficulty acting on intentions arises from associated tendencies to resist stopping, starting and changing activity. While difficulty with planning and prioritizing was common, a subset of participants described a more profound impairment in initiating even simple actions. Participants described complex interactions between various external and internal factors and their ability to act. What was consistent and universal among our participants was that the inability to start and stop activities at will had profound and pervasive effects on their day-to-day lives and general wellbeing.”
Buckle, K. L., Leadbitter, K., Poliakoff, E., & Gowen, E. (2021). “No Way Out Except From External Intervention”: First-Hand Accounts of Autistic Inertia. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.631596

Monotropism research demonstrates that when children’s interests are prioritized in an educational setting, their participation increases.

“…The final theme, monotropism, described how autistic children viewed their time as precious so they could maximise engagement in their interests.”
Poole, D., Gowen, E., Poliakoff, E., & Jones, L. A. (2021). ‘No idea of time’: Parents report differences in autistic children’s behaviour relating to time in a mixed-methods study. Journal of Autism, 25(6), 1797-1808. https://doi.org/10.1177/13623613211010014

Rebecca Wood (2021) Autism, intense interests and support in school: from wasted efforts to shared understandings, Educational Review, 73:1, 34-54, DOI: 10.1080/00131911.2019.1566213
https://eprints.gla.ac.uk/273222/1/273222.pdf

Murray D. (2018) Monotropism – An Interest Based Account of Autism. In: Volkmar F. (eds) Encyclopedia of Autism Spectrum Disorders. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-6435-8_102269-

Murray D, Lesser M, Lawson W. Attention, monotropism and the diagnostic criteria for autism. Autism. 2005;9(2):139-156. doi:10.1177/1362361305051398

They included a goal that was centered on attention span, I included information about neurotypical attentional focus and how it differs from those with my child’s disability, cited information pertaining to my specific child, and explained how my son breaks attention to visually stim when stressed.    

Discouraged male student turned away from work at school
Boy laying head and arms on desk.

Stimming is beneficial. It’s calming and helps autistic people cope and self-regulate.

“…growing evidence suggests that repetitive behaviors have been misunderstood — and that they may in fact be incredibly useful. My colleagues and I have found that the behaviors give autistic people a sense of control, helping them cope with overwhelming external stimuli, and a way to calm and communicate their moods.”
Kapp, Steven. “Stimming, therapeutic for autistic people, deserves acceptance.” Spectrum. 25 June, 2019.

Autistic adults describe the positive effects of stimming and the negative effect of social pressure to suppress stims, this challenges the prevailing view (largely from studies in childhood) that stimming is negative behaviour.
Rebecca A. Charlton, Timothy Entecott, Evelina Belova, & Gabrielle Nwaordu (2021). “It feels like holding back something you need to say”: Autistic and Non-Autistic Adults accounts of sensory experiences and stimming. Research in Autism Spectrum Disorders, 89, 101864.

Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.
Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782–1792. 

Anxiety is a primary co-occurring condition in autistic children and significantly impacts attention, learning, mental health, and quality of life.

Mingins, J. E., Tarver, J., Waite, J., Jones, C., & Surtees, A. D. (2021). Anxiety and intellectual functioning in autistic children: A systematic review and meta-analysis. Autism, 25(1), 18–32. 

 Stark E, Stacey J, Mandy W, Kringelbach ML, Happé F. Autistic Cognition: Charting Routes to Anxiety. Trends Cogn Sci. 2021 Jul;25(7):571-581. doi: 10.1016/j.tics.2021.03.014. Epub 2021 May 3. PMID: 33958281

Jenkinson R, Milne E, Thompson A. The relationship between intolerance of uncertainty and anxiety in autism: A systematic literature review and meta-analysis. Autism. 2020 Nov;24(8):1933-1944. doi: 10.1177/1362361320932437. Epub 2020 Jun 22. PMID: 32564625; PMCID: PMC7539603.

Adams, D., Clark, M. & Simpson, K. The Relationship Between Child Anxiety and the Quality of Life of Children, and Parents of Children, on the Autism Spectrum. J Autism Dev Disord 50, 1756–1769 (2020). https://doi.org/10.1007/s10803-019-03932-2

 

We spent 20 minutes here, they did not grasp what I was stating that my child cannot hold focused sustained attention without “task avoidance behaviors” such as requesting the bathroom, arguing with peers or distracting peers, verbal noise, or pulling up outside activity to work on other than assigned material.”

 

“If a child isn’t on board with what’s being demanded of them, then what we call PDA is actually a really powerful act of consent and self-advocacy.  Many educators and mental health providers expect children to comply with instructions, regardless of whether they understand or agree. So, any struggle or hesitation is pathologized.” – Devon Price, PhD
As cited in: Hess, Peter. “Pathological demand avoidance in autism, explained.” Spectrum. 11, August, 2022. 

This paper concludes by arguing that the label of PDA represents the medicalising and pathologising of behaviours that from an outsider perspective seem to be differentiated from what is deemed capable by autistic people, but could be seen as the behaviours of an autistic person who has gained a modicum of normative social skills and is simply asserting their agency. By pathologising such behaviour, one could unduly be blunting attempts at autistic self-advocacy.Milton, Damian (2013) ‘Natures answer to over-conformity’: deconstructing Pathological Demand Avoidance. Autism Experts Online article. (KAR id:62694) 

                       

I refused goals pertaining to volume of voice and “appropriate” word choice. I cited a lack of educational relevance, and how this leads to his meltdowns from anxiety because he cannot control his volume when his anxiety is amped up — he is in a fight or flight and wants people to back off immediately prior to the meltdown.


It is a survival technique. In the IEP document itself, they outlined his meltdown progression including information “when student is told something he doesn’t like, he will cry” I asked for this to be removed as I did not find it relevant to highlight child’s trauma and enshrine it in legal documentation. They cited they could not. It is teacher feedback and unable to be altered. Back and forth conversation ensued— roughly 20 minutes with them holding position and we got nowhere.

The IEP committee must, per IDEA, define how individualized goals, including the ones, “pertaining to volume of voice and appropriate word choice” impact the student’s ability to participate in the educational setting. If an IEP committee insists on implementing IEP goals that parent(s) do not agree with, parents should

1) request to review the collected data from the school that supports their proposal to target the student’s “deficit” regarding how this “deficit” actually impacted the student’s ability to participate over a specified period of time, and what accommodations have been used without success.

IDEA Section §1414 (d)
how the child’s disability affects the child’s involvement and progress in the general education curriculum.”

2) Request to see the research evidence the campus is using to support such goals.

IDEA Section §1414 (d)
(IV) a statement of the special education and related services and supplementary aids and services, based on peer-reviewed research

IDEA PART B SUPPLEMENTAL REGULATIONS
Revocation of consent for a particular service: If a parent disagrees with the provision of a particular special education or related service and the parent and public agency agree that the child would be provided with a free appropriate public education (FAPE) if the child did not receive that service, the public agency should remove the service from the child’s individualized education program (IEP)

Family Educational Rights and Privacy Act (FERPA)
FERPA gives parents certain rights with respect to their children’s education records.
Parents or eligible students have the right to request that a school correct records which they believe to be inaccurate or misleading. If the school decides not to amend the record, the parent or eligible student then has the right to a formal hearing. After the hearing, if the school still decides not to amend the record, the parent or eligible student has the right to place a statement with the record setting forth his or her view about the contested information.

IDEA PART B SUPPLEMENTAL REGULATIONS
Amendment of records: Section 300.9(c)(3) (providing that a public agency is not required, because a parent revokes consent for continued services, to amend child’s education records to remove references to the child’s receipt of special education and related services) does not affect the rights provided to parents in the confidentiality provisions in §§300.618 through 300.621, including the opportunity to request amendments to information in education records that is inaccurate or misleading, or violates the privacy or other rights of a child.
https://sites.ed.gov/idea/files/March_2009_Part_B_Supp_Regs_Guidance-2.pdf

I stated I am vehemently against social skills training of any kind, especially for a neurodivergent child, let alone MY NEURODIVERGENT child. And that I do not consent to any type of social skills training being used on my son. They stated that he receives the service as a part of his class and all children in that class are neurodivergent.

The campus’ blanket policy is a violation of Least Restrictive Environment.

Sec. 300.114 LRE requirements

This blanket policy is not individualized.

IDEA (FAPE) is through an appropriately developed individualized education program (IEP) that is based on the individual needs of the child.

Supreme Court of the United States. Endrew v Douglas. March 22, 2017.
Special education” is “specially designed instruction . . . to meet the unique needs of a child with a disability”; “related services” are the support services “required to assist a child . . . to benefit from” that instruction. §§1401(26).  A State covered by the IDEA must provide a disabled child with such special education and related services “in conformity with the [child’s] individualized education program,” or IEP. §1401(9)(D).

Supreme Court of United States, Fry v Napoleon: February 22, 2017
The [IDEA’s] goal is to provide each child with meaningful access to education by offering individualized instruction and related services appropriate to her “unique needs.” … By contrast, Title II of the ADA and § 504 of the Rehabilitation Act … aim to root out disability-based discrimination, enabling each covered person (sometimes by means of reasonable accommodations) to participate equally to all others in public facilities and federally funded programs…. In short, the IDEA guarantees individually tailored educational services, while Title II and § 504 promise nondiscriminatory access to public institutions.

Parents have the right to refuse consent for any services that are not provided to the entire regular education population of the same age and grade.

            IDEA Sec. 300.300 Parental consent
            https://sites.ed.gov/idea/regs/b/d/300.300

I cite that they are then subjecting an entire classroom of students to ableist instruction designed to teach them how to people please, align with neurotypical standards of communication, and that these things set these children up for an increased rate of anxiety, depression, possible assault from not understanding boundaries properly, and even things such as suicide. They hold their ground. Stating they never teach masking to a child. I explain that voice or tone goals are doing just that. We disagree and reach no outcome.

An IEP committee is required per IDEA to consider any potential harmful effects on a special education student. If a parent has made the IEP committee aware of a potential harm, the parent has the right to have this information documented in the IEP, along with their refusal of consent to the “service.”

IDEA Sec. 300.116 Placements
(d) In selecting the LRE, consideration is given to any potential harmful effect on the child or on the quality of services that he or she needs;

Autistic masking and camouflaging’s impact on children and young people is just as detrimental as it is for adults.

The findings are consistent with previous research indicating that masking is associated with mental health difficulties. Our analysis presents a broader conceptualisation of masking than previously defined in the literature, placing social oppression of autistic people at the heart of the relationship between masking and mental health.
Chapman, L., Rose, K., Hull, L., & Mandy, W. (2022). “I want to fit in… but I don’t want to change myself fundamentally”: A qualitative exploration of the relationship between masking and mental health for autistic teenagers. Research in Autism Spectrum Disorders, 99, 102069. 

This study evaluated camouflaging in a sample of 359 female and 374 male autistic children and adolescents (4-17 years, 48.9% females). Findings indicated that camouflaging was a significant predictor of internalizing (i.e., anxiety, depression, somatic complaints) symptoms, when controlling for age, gender, and IQ.
Ross A, Grove R, McAloon J. The relationship between camouflaging and mental health in autistic children and adolescents. Autism Res. 2023 Jan;16(1):190-199. doi: 10.1002/aur.2859. Epub 2022 Nov 23. PMID: 36416274.

And social skills training isn't even evidence-based.

They ended the meeting with accommodations, none of the proposed ones that I linked with lagging skills and supplementary information in order to show justification for them being added, were added.

Parents have equal rights to the campus to meaningfully contribute to an IEP.

Supreme Court of the United States: Schaffer vs Weast. November 14, 2005
Parents and guardians play a significant role in the IEP process. They must be informed about and consent to evaluations of their child under the Act. §1414(c)(3). Parents are included as members of “IEP teams.” §1414(d)(1)(B). They have the right to examine any records relating to their child, and to obtain an “independent educational evaluation of the[ir] child.” §1415(b)(1). They must be given written prior notice of any changes in an IEP, §1415(b)(3), and be notified in writing of the procedural safeguards available to them under the Act, §1415(d)(1). If parents believe that an IEP is not appropriate, they may seek an administrative “impartial due process hearing.” §1415(f).    

SUPREME COURT OF THE UNITED STATES: Endrew v Douglas, March 22, 2017
A comprehensive plan prepared by a child’s “IEP Team” (which includes teachers, school officials, and the child’s parents), an IEP must be drafted in compliance with a detailed set of procedures. §1414(d)(1)(B) (internal quotation marks omitted). These procedures emphasize collaboration among parents and educators and require careful consideration of the child’s individual circumstances. §1414.

Worse so, they stated that they did not want to add accommodations that weren’t going to end up being used then proceeded to ask the student line by line, after reading each accommodation, if he was using them in class. I cited that he was unaware of how they would be implemented and self-advocacy in moments of stress is something ongoing, related to his anxiety and current executive functioning areas, and not something he should be beholden to for them to do the right thing and help him work through meltdown safely, and in order to properly access the same curriculum that his peers are able to. We argued here for a while.

 

Unless this student is of age, the school must consider all parent IEP contributions and parents must be an equal members of the team. If the campus refuses to implement accommodations that the parent has recommended, the parent has the right to have the campus refusal documented in the IEP, along with their rationale for refusal. The parent also has the right to disagree with the accommodations the campus proposes, have that disagreement documented in the IEP as well, and then follow due process as provided by IDEA.

IDEA Sec. 300.501
Opportunity to examine records; parent participation in meetings
(c) Parent involvement in placement decisions.
(1) Each public agency must ensure that a parent of each child with a disability is a member of any group that makes decisions on the educational placement of the parent’s child.

IDEA PART B SUPPLEMENTAL REGULATIONS
Revocation of consent for a particular service: If a parent disagrees with the provision of a particular special education or related service and the parent and public agency agree that the child would be provided with a free appropriate public education (FAPE) if the child did not receive that service, the public agency should remove the service from the child’s individualized education program (IEP) and, since it does not disagree with the parents, would not have a basis for using the procedures in Subpart E of the regulations to require the service be provided to the child. If, however, the parent and public agency disagree about whether the child would be provided FAPE if the child did not receive a particular special education or related service, the parent may use the due process procedures in Subpart E of the regulations to obtain a ruling that the service with which the parent disagrees is not appropriate for their child.

I’m fed up. I’m burnt out. I’m going through the necessary channels but I am autistic myself and I tend to lock up when I don’t have a prepared script to help me choose the specific words needed for a given situation when that situation causes me anxiety. And that anxiety is always present involving my own children and their areas of need. I advocated hard here and we got nowhere in terms of their understanding that I have zero interest in trying to change my child into a neurotypical student.

Looking for any insight at all if anyone happens to have any spoons to donate pertaining to the goal areas primarily. Them holding him to attentional goals instead of even trying to teach strategies to aid in refocusing after a needed visual stim break and them trying to police his volume during a meltdown or anxiety situation are my main issues, most of the others are being handled by other means.

 

The student’s mental health is at risk because of the way the school is handling his external signs of distress, and overwhelm in the classroom, and because of the campus’ assistance on autistic students conforming with non-autistic social skills. Parents should insist their concerns be documented in the IEP. 

Many interventions treat behavior perceived from the outside, without understanding the meaning or necessity for the child. The behavior is the tip of an iceberg that goes down to sensory, social, emotional, motoric, and cognitive issues the child experiences. A child who is “acting out” may be responding to internal frustration, overstimulation, anxiety, or some other distress. Plans often focus on eliminating the “acting out” behavior instead of recognizing distress. We need to support children, not single-mindedly focus on correcting behavior.
Eckerd, Marcia. (2021, August 31). Are We Giving Autistic Children PTSD From School? Psychology Today.

Also, if there is a more digestible way to share information with neurotypical teachers pertaining to ableism, masking, double empathy problem, etc. aside from literally handing it to them or citing studies (which I did, but it was not well received and I was accused of being condescending in turn) that you have had success with, I am open to options.

 

The campus is required to consider research evidence that a parent brings to their attention. If a parent takes the time to gather and supply research evidence that will improve special education services for the disabled child and the campus dismisses them, it is the campus that is condescending, not the parent.

United States Congress: Recertification of IDEA 2004
a statement of special education, related services, and supplementary aids and services, based on peer-reviewed research …” (Section 414(d)(1)(A))

Department of Education Non-Regulatory Guidance: Using Evidence to Strengthen Education Investments
The Department is issuing this guidance to provide State educational agencies (SEAs), local educational agencies (LEAs), schools, educators, and partner organizations with information to assist them in selecting and using “evidence-based” activities, strategies, and interventions, as defined in Title VIII of the Elementary and Secondary Education Act of 1965 (ESEA), as amended by the Every Student Succeeds Act of 2015 (ESSA). SEAs and LEAs should engage in timely and meaningful consultation with a broad range of stakeholders (e.g., families, students, educators, and community partners) and examine relevant data to understand the most pressing needs of students, schools, and/or educators and the potential root causes of those needs.

 

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IEPs, Ableist Goals and Parents’ Rights

A neurodiversity-affirming parent’s anonymous post to Therapist Neurodiversity Collective requested information that might help them advocate for their special education student in the IEP meeting. From the information contained in the post, it appeared that the school, although possibly unintentionally, was not aware of IDEA and Supreme Court decisions, and therefore violated parental rights to meaningfully participate in and contribute to the IEP meeting. Additionally, it is clear that our public school system is lagging in knowledge and application of contemporary research evidence about autism, and as a result, the kids are paying the consequences with poor mental health outcomes. 

Read More »
Picture of young student with brown hair, head in hands, sitting at desk.

Not allowed to say “I can’t”

“The kids in my class aren’t allowed to say I can’t.” I’m in an IEP meeting for young neurodivergent student who’s struggling in class. The committee is talking about all the reasons why this student should not be struggling because their standardized cognitive and language scores show they have the ability to learn and do the work.

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Julie Roberts, M.S. CCC-SLP

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