Which Congressman Is Blocking Bill That Would Protect Kids with Autism?

11 Dec

ABC News and a few other sources have had stories recently on the Seclusion and Restraint bill that is currently in the U.S. Congress. One can gather a great deal from the title of the ABC News story: Which Congressman Is Blocking Bill That Would Protect Kids with Autism?

The story starts out:

Legislation aimed at protecting children with autism and other disabilities from being injured in school has stalled in the House of Representatives at the hands of a single member who objects to federal intervention.

Minnesota Republican Rep. John Kline, who chairs the House’s education committee, has frozen action in the House on a proposal to institute national standards for how teachers and school staff can safely restrain students.

“Chairman Kline believes state officials and school leaders are best equipped to determine appropriate policies that should be in place to protect students and to hold those who violate those policies accountable,” said Alexandra Haynes Sollberger, the communications director for the House Committee on Education and the Workforce. “For this reason, the committee has not scheduled any action on seclusion and restraint legislation at this time.”

The “Latest Major Action” for this bill was on 4/15/2011 when it was “Referred to House subcommittee. Status: Referred to the Subcommittee on Early Childhood, Elementary, and Secondary Education” where it has stalled.

Congressman Miller, the sponsor of the bill is quoted by ABC News:

“There is no excuse for inaction,” Miller said. “In the past, this Committee has worked tirelessly on behalf of children’s safety. Our investigations made clear that a federal law is necessary to protect all children across the country and ensure that children’s safety does not depend on the state in which they live. I hope that we can put aside politics and ideologies, tackle these issues together, and do what we can legislatively to save children from abuse.”

This has not been a great month for the U.S. legislature and autism/disability issues. We had the Senate vote not ratifying the Convention on the Rights of Persons with Disabilities (CRPD) a hearing which tried to revive the old failed vaccine-epidemic and now this. I admit, the seclusion and restraint bill has been stalled for 8 months, but it’s coming to a head now with congress about to depart. At that point, this bill will die and the process will have to start all over again. Because one person won’t let it go to a vote.

Here is the text of H.R. 1381.:

SECTION 1. SHORT TITLE

This Act may be cited as the `Keeping All Students Safe Act’.
SEC. 2. FINDINGS.

Congress finds the following:
(1) Physical restraint and seclusion have resulted in physical injury, psychological trauma, and death to children in public and private schools. National research shows students have been subjected to physical restraint and seclusion in schools as a means of discipline, to force compliance, or as a substitute for appropriate educational support.
(2) Behavioral interventions for children must promote the right of all children to be treated with dignity. All children have the right to be free from physical or mental abuse, aversive behavioral interventions that compromise health and safety, and any physical restraint or seclusion imposed solely for purposes of discipline or convenience.
(3) Safe, effective, evidence-based strategies are available to support children who display challenging behaviors in school settings. Staff training focused on the dangers of physical restraint and seclusion as well as training in evidence-based positive behavior supports, de-escalation techniques, and physical restraint and seclusion prevention, can reduce the incidence of injury, trauma, and death.
(4) School personnel have the right to work in a safe environment and should be provided training and support to prevent injury and trauma to themselves and others.
(5) Despite the widely recognized risks of physical restraint and seclusion, a substantial disparity exists among many States and localities with regard to the protection and oversight of the rights of children and school personnel to a safe learning environment.
(6) Children are subjected to physical restraint and seclusion at higher rates than adults. Physical restraint which restricts breathing or causes other body trauma, as well as seclusion in the absence of continuous face-to-face monitoring, have resulted in the deaths of children in schools.
(7) Children are protected from inappropriate physical restraint and seclusion in other settings, such as hospitals, health facilities, and non-medical community-based facilities. Similar protections are needed in schools, yet such protections must acknowledge the differences of the school environment.
(8) Research confirms that physical restraint and seclusion are not therapeutic, nor are these practices effective means to calm or teach children, and may have an opposite effect while simultaneously decreasing a child’s ability to learn.
(9) The effective implementation of school-wide positive behavior supports is linked to greater academic achievement, significantly fewer disciplinary problems, increased instruction time, and staff perception of a safer teaching environment.
SEC. 3. PURPOSES.

The purposes of this Act are to–
(1) prevent and reduce the use of physical restraint and seclusion in schools;
(2) ensure the safety of all students and school personnel in schools and promote a positive school culture and climate;
(3) protect students from–
(A) physical or mental abuse;
(B) aversive behavioral interventions that compromise health and safety; and
(C) any physical restraint or seclusion imposed solely for purposes of discipline or convenience;
(4) ensure that physical restraint and seclusion are imposed in school only when a student’s behavior poses an imminent danger of physical injury to the student, school personnel, or others; and
(5) assist States, local educational agencies, and schools in–
(A) establishing policies and procedures to keep all students, including students with the most complex and intensive behavioral needs, and school personnel safe;
(B) providing school personnel with the necessary tools, training, and support to ensure the safety of all students and school personnel;
(C) collecting and analyzing data on physical restraint and seclusion in schools; and
(D) identifying and implementing effective evidence-based models to prevent and reduce physical restraint and seclusion in schools.
SEC. 4. DEFINITIONS.

In this Act:
(1) CHEMICAL RESTRAINT- The term `chemical restraint’ means a drug or medication used on a student to control behavior or restrict freedom of movement that is not–
(A) prescribed by a licensed physician, or other qualified health professional acting under the scope of the professional’s authority under State law, for the standard treatment of a student’s medical or psychiatric condition; and
(B) administered as prescribed by the licensed physician or other qualified health professional acting under the scope of the professional’s authority under State law.
(2) EDUCATIONAL SERVICE AGENCY- The term `educational service agency’ has the meaning given such term in section 9101(17) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(17)).
(3) ELEMENTARY SCHOOL- The term `elementary school’ has the meaning given the term in section 9101(18) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(18)).
(4) LOCAL EDUCATIONAL AGENCY- The term `local educational agency’ has the meaning given the term in section 9101(26) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(26)).
(5) MECHANICAL RESTRAINT- The term `mechanical restraint’ has the meaning given the term in section 595(d)(1) of the Public Health Service Act (42 U.S.C. 290jj(d)(1)), except that the meaning shall be applied by substituting `student’s’ for `resident’s’.
(6) PARENT- The term `parent’ has the meaning given the term in section 9101(31) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(31)).
(7) PHYSICAL ESCORT- The term `physical escort’ has the meaning given the term in section 595(d)(2) of the Public Health Service Act (42 U.S.C. 290jj(d)(2)), except that the meaning shall be applied by substituting `student’ for `resident’.
(8) PHYSICAL RESTRAINT- The term `physical restraint’ has the meaning given the term in section 595(d)(3) of the Public Health Service Act (42 U.S.C. 290jj(d)(3)).
(9) POSITIVE BEHAVIOR SUPPORTS- The term `positive behavior supports’ means a systematic approach to embed evidence-based practices and data-driven decisionmaking to improve school climate and culture, including a range of systemic and individualized strategies to reinforce desired behaviors and diminish reoccurrence of problem behaviors, in order to achieve improved academic and social outcomes and increase learning for all students, including those with the most complex and intensive behavioral needs.
(10) PROTECTION AND ADVOCACY SYSTEM- The term `protection and advocacy system’ means a protection and advocacy system established under section 143 of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15043).
(11) SCHOOL- The term `school’ means an entity–
(A) that–
(i) is a public or private–
(I) day or residential elementary school or secondary school; or
(II) early childhood, elementary school, or secondary school program that is under the jurisdiction of a school, local educational agency, educational service agency, or other educational institution or program; and
(ii) receives, or serves students who receive, support in any form from any program supported, in whole or in part, with funds appropriated to the Department of Education; or
(B) that is a school funded or operated by the Department of the Interior.
(12) SCHOOL PERSONNEL- The term `school personnel’ has the meaning–
(A) given the term in section 4151(10) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7161(10)); and
(B) given the term `school resource officer’ in section 4151(11) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7161(11)).
(13) SECONDARY SCHOOL- The term `secondary school’ has the meaning given the term in section 9101(38) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(38)).
(14) SECLUSION- The term `seclusion’ has the meaning given the term in section 595(d)(4) of the Public Health Service Act (42 U.S.C. 290jj(d)(4)).
(15) SECRETARY- The term `Secretary’ means the Secretary of Education.
(16) STATE-APPROVED CRISIS INTERVENTION TRAINING PROGRAM- The term `State-approved crisis intervention training program’ means a training program approved by a State and the Secretary that, at a minimum, provides–
(A) training in evidence-based techniques shown to be effective in the prevention of physical restraint and seclusion;
(B) training in evidence-based techniques shown to be effective in keeping both school personnel and students safe when imposing physical restraint or seclusion;
(C) evidence-based skills training related to positive behavior supports, safe physical escort, conflict prevention, understanding antecedents, de-escalation, and conflict management;
(D) training in first aid and cardiopulmonary resuscitation;
(E) information describing State policies and procedures that meet the minimum standards established by regulations promulgated pursuant to section 5(a); and
(F) certification for school personnel in the techniques and skills described in subparagraphs (A) through (D), which shall be required to be renewed on a periodic basis.
(17) STATE- The term `State’ has the meaning given the term in section 9101 of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801).
(18) STATE EDUCATIONAL AGENCY- The term `State educational agency’ has the meaning given the term in section 9101(41) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(41)).
(19) STUDENT- The term `student’ means a student enrolled in a school defined in paragraph (11), except that in the case of a student enrolled in a private school or private program, such term means a student who receives support in any form from any program supported, in whole or in part, with funds appropriated to the Department of Education.
(20) TIME OUT- The term `time out’ has the meaning given the term in section 595(d)(5) of the Public Health Service Act (42 U.S.C. 290jj(d)(5)), except that the meaning shall be applied by substituting `student’ for `resident’.
SEC. 5. MINIMUM STANDARDS; RULE OF CONSTRUCTION.

(a) Minimum Standards- Not later than 180 days after the date of the enactment of this Act, in order to protect each student from physical or mental abuse, aversive behavioral interventions that compromise student health and safety, or any physical restraint or seclusion imposed solely for purposes of discipline or convenience or in a manner otherwise inconsistent with this Act, the Secretary shall promulgate regulations establishing the following minimum standards:
(1) School personnel shall be prohibited from imposing on any student the following:
(A) Mechanical restraints.
(B) Chemical restraints.
(C) Physical restraint or physical escort that restricts breathing.
(D) Aversive behavioral interventions that compromise health and safety.
(2) School personnel shall be prohibited from imposing physical restraint or seclusion on a student unless–
(A) the student’s behavior poses an imminent danger of physical injury to the student, school personnel, or others;
(B) less restrictive interventions would be ineffective in stopping such imminent danger of physical injury;
(C) such physical restraint or seclusion is imposed by school personnel who–
(i) continuously monitor the student face-to-face; or
(ii) if school personnel safety is significantly compromised by such face-to-face monitoring, are in continuous direct visual contact with the student;
(D) such physical restraint or seclusion is imposed by–
(i) school personnel trained and certified by a State-approved crisis intervention training program (as defined in section 4(16)); or
(ii) other school personnel in the case of a rare and clearly unavoidable emergency circumstance when school personnel trained and certified as described in clause (i) are not immediately available due to the unforeseeable nature of the emergency circumstance; and
(E) such physical restraint or seclusion ends immediately upon the cessation of the conditions described in subparagraphs (A) and (B).
(3) States, in consultation with local educational agencies and private school officials, shall ensure that a sufficient number of personnel are trained and certified by a State-approved crisis intervention training program (as defined in section 4(16)) to meet the needs of the specific student population in each school.
(4) The use of physical restraint or seclusion as a planned intervention shall not be written into a student’s education plan, individual safety plan, behavioral plan, or individualized education program (as defined in section 602 of the Individuals with Disabilities Education Act (20 U.S.C. 1401)). Local educational agencies or schools may establish policies and procedures for use of physical restraint or seclusion in school safety or crisis plans, provided that such school plans are not specific to any individual student.
(5) Schools shall establish procedures to be followed after each incident involving the imposition of physical restraint or seclusion upon a student, including–
(A) procedures to provide to the parent of the student, with respect to each such incident–
(i) an immediate verbal or electronic communication on the same day as each such incident; and
(ii) within 24 hours of each such incident, written notification; and
(B) any other procedures the Secretary determines appropriate.
(b) Secretary of the Interior- The Secretary of the Interior shall ensure that schools operated or funded by the Department of the Interior comply with the regulations promulgated by the Secretary under subsection (a).
(c) Rule of Construction- Nothing in this section shall be construed to authorize the Secretary to promulgate regulations prohibiting the use of–
(1) time out (as defined in section 4(20)); or
(2) devices implemented by trained school personnel, or utilized by a student, for the specific and approved therapeutic or safety purposes for which such devices were designed and, if applicable, prescribed, including–
(A) restraints for medical immobilization;
(B) adaptive devices or mechanical supports used to achieve proper body position, balance, or alignment to allow greater freedom of mobility than would be possible without the use of such devices or mechanical supports; or
(C) vehicle safety restraints when used as intended during the transport of a student in a moving vehicle; or
(3) handcuffs by school resource officers (as such term is defined in section 4151(11) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7161(11)))–
(A) in the–
(i) case when a student’s behavior poses an imminent danger of physical injury to the student, school personnel, or others; or
(ii) lawful exercise of law enforcement duties; and
(B) less restrictive interventions would be ineffective.
SEC. 6. STATE PLAN AND REPORT REQUIREMENTS AND ENFORCEMENT.

(a) State Plan- Not later than 2 years after the Secretary promulgates regulations pursuant to section 5(a), and each year thereafter, each State educational agency shall submit to the Secretary a State plan that provides–
(1) assurances to the Secretary that the State has in effect–
(A) State policies and procedures that meet the minimum standards, including the standards with respect to State-approved crisis intervention training programs, established by regulations promulgated pursuant to section 5(a); and
(B) a State mechanism to effectively monitor and enforce the minimum standards;
(2) a description of the State policies and procedures, including a description of the State-approved crisis intervention training programs in such State; and
(3) a description of the State plans to ensure school personnel and parents, including private school personnel and parents, are aware of the State policies and procedures.
(b) Reporting-
(1) REPORTING REQUIREMENTS- Not later than 2 years after the date the Secretary promulgates regulations pursuant to section 5(a), and each year thereafter, each State educational agency shall (in compliance with the requirements of section 444 of the General Education Provisions Act (commonly known as the `Family Educational Rights and Privacy Act of 1974′) (20 U.S.C. 1232g)) prepare and submit to the Secretary, and make available to the public, a report that includes the information described in paragraph (2), with respect to each local educational agency, and each school not under the jurisdiction of a local educational agency, located in the same State as such State educational agency.
(2) INFORMATION REQUIREMENTS-
(A) GENERAL INFORMATION REQUIREMENTS- The report described in paragraph (1) shall include information on–
(i) the total number of incidents in the preceding full-academic year in which physical restraint was imposed upon a student; and
(ii) the total number of incidents in the preceding full-academic year in which seclusion was imposed upon a student.
(B) DISAGGREGATION-
(i) GENERAL DISAGGREGATION REQUIREMENTS- The information described in subparagraph (A) shall be disaggregated by–
(I) the total number of incidents in which physical restraint or seclusion was imposed upon a student–
(aa) that resulted in injury;

(bb) that resulted in death; and

(cc) in which the school personnel imposing physical restraint or seclusion were not trained and certified as described in section 5(a)(2)(D)(i); and

(II) the demographic characteristics of all students upon whom physical restraint or seclusion was imposed, including–
(aa) the categories identified in section 1111(h)(1)(C)(i) of the Elementary and Secondary Education Act of 1965 (20 U.S.C.


By Matt Carey

About these ads

11 Responses to “Which Congressman Is Blocking Bill That Would Protect Kids with Autism?”

  1. Lara Lohne December 11, 2012 at 04:13 #

    Whew! That was a lot of politalk to read through, but I got there! I don’t see any reason why anyone would feel these guidelines are over stepping any bounds. The fact that children, typically disabled children, have been physically injured, suffered emotional trauma or even died from the use of restraint and seclusion in schools, should be reason enough for people to see there needs to be something on the federal level. Leaving it to the individual states in many cases is a severe injustice to the very children who are in danger the most. I am so disgusted with the inaction and even some of the action of members of congress over the past month. The hearing last month was a joke to say the least, with members in the autism community going to far as to post blogs stating “Congress held an anti-vaccine hearing!” Which really isn’t far from the truth.

    It is inaction like this that lead me to believe there are some members that just don’t see disabled children, or maybe even adults also, as real people with real feelings. How do we put in our voice to make sure congress gets off its keister and gets this implemented? Let us know and I will share/tweet to everyone I know! Let’s breath down congress’s neck so they have to act, before it’s too late.

  2. Audrey December 11, 2012 at 18:59 #

    This is the only part I’m not sure about:

    “The use of physical restraint or seclusion as a planned intervention shall not be written into a student’s education plan, individual safety plan, behavioral plan, or individualized education program (as defined in section 602 of the Individuals with Disabilities Education Act (20 U.S.C. 1401)).”

    It seems to me that if a child has chronic severe behaviors that may require restraint, I’d rather this be planned and written down than improvised. Obviously, the IEP should have several non-physical interventions planned before restraint is considered, but I wonder if abuses are less likely when all there is an individualized plan (rather than only the school’s general plan). I suppose I would rather see some procedural regulations requiring independent review and staff training before restraint is put in an IEP rather than rule it out entirely.

    • Lara Lohne December 11, 2012 at 19:20 #

      I think the reason behind not including it in an IEP, is because those cases where abuse of restraint or seclusion that has resulted in injury or death are cases when it was included in an IEP, as a last resort only, and it was being used as the default option. Rather then trying to help the child, teach him/her to self regulate better, they were restrained or placed in seclusion without attempting any other intervention options.

      I suppose, if it was me, I wouldn’t want that to even be an option. I would want every other method available to be used first and if they were unsuccessful, I’d want to school to call me to come and try before placing my son in a tiny room for hours at a time. My son does not like small, enclosed spaces, they actually cause him a great amount of anxiety. How many other children are like that too? And with my son, restraint makes him feel like being in a tiny, enclosed space and all he wants to do is get away. I have had to use mild and short lived restraint on my son when he was younger occasionally, to keep him from hurting himself, or me. He’s very strong so it wasn’t ever easy. And he always fought the restraint and it very clearly made him more anxious to start with until I was able to get him to listen to me and take deep breaths. He has learned to self regulate beautifully over the past year or so, but ever now and then can become overwhelmed and will act out.

      We are fortunate that at his school their ‘seclusion room’ is really just an office, with a large picture window in the wall, they call it the break room or sensory room. There are sensory items to play with, different textured tiles on the wall, even bubble wrap for them to pop. There is also a big box in the corner draped with a dark sheet, lined with padding and with pillows and blankets where, if necessary, the child can go in and be ‘separate’ from everyone else in the room. Generally only one child goes in this room at a time, they are typically with an adult special needs teacher and they aren’t ever locked in. In my opinion, this is the type of ‘seclusion’ that a child might need, a quiet place where most of the sensory overloading input can be removed (they even have dim, pleasing lighting in the room) but locking a child up in a tiny room with no windows and left there for hours? That is unacceptable and is no different from a prison cell in a mental institution.

  3. BA December 13, 2012 at 17:55 #

    I agree that the language about not allowing a plan in the IEP is problematic. It might sound good to plan to never restrain but if it is not planned then it is usually done by people who do not follow a set of vetted procedures for implementing the intervention.

    • Sullivan (Matt Carey) December 13, 2012 at 18:47 #

      If a student requires seclusion and restraint in a given placement, enough to warrant including it in the IEP document, would that not indicate that this is an inappropriate placement?

      • Audrey December 13, 2012 at 18:56 #

        It could, especially if it was needed frequently, but consider the following scenario:
        Young person with ASD is academically able to handle general education classes but has a lot of triggers, not all of which are known. Triggers rarely cause him to bolt out of the school without regard for his own safety. He’s put in gen ed with an aide who is supposed to help manage his triggers. They have two choices: they can either wait until all triggers are identified and/or the kid can learn to bolt safely OR they can have a plan to restrain briefly in the rare event the kid bolts into danger. I can see the benefit of both plans. One is more behaviorally proactive, the other gets the kid better academics in a less restrictive environment. I could see rational people choosing either plan.

        I completely understand and agree with the argument that if it is allowed, chances increase that it will be abused, but at the same time, I’m not sure I want to close off this avenue entirely.

      • Lara Lohne December 13, 2012 at 21:21 #

        Audrey,

        My problem is not with removing the child from the gen pop of the school when they are overloaded and allowing them to take a break and unwind, (they do that with most of the special needs children at my son’s school, yet they don’t call it seclusion and they are constantly with an aide unless they need to be completely alone) but with placing a child in a tiny, padded room, that’s locked from the outside, has no windows and leaving them in their for hours or using physical or chemical restraint (I’ve read stories of schools giving prescription medication [Risperdal] to children with disabilities to control behaviors that were not specifically prescribed that medication). I see too many stories of this being the general practice for seclusion rooms and many parents aren’t aware of the extent to which the school is using them on their child until injury and/or death has already occurred.

        I read about one boy who died in a room like that. He had moderate ASD with significant sensory hyperactivity and would melt down regularly and was self injurious when he did. It was written in his IEP that their ‘seclusion room’ was OK to be used, when all other methods of calming had failed. The boy’s mother did not have difficulties with him acting out at home because she could recognize his triggers, one of which was being too intimate or feeling confined, (E.g. restraint). In this particular case, the school did nothing to lessen the sensory stimulus that was a trigger for the child, and thus he had frequent meltdowns at school, which were handled by secluding him in their little padded closet for at hour at the least and the remainder of the day at most. The mother never knew, not until one day, when the school had to call 911 because on this particular day, the child was hitting himself in the head and so he was physically restrained and forced into the seclusion room where he was left to bang his head into the wall repeatedly until he started showing bruises. They went in and restrained him from running at the wall, by attaching him to a tether that connected to the ceiling, left him, closed and locked the door and didn’t check on him again until they noticed there was no sound coming from the closet. They peeked through the peep hole and he was dangling, motionless. They unlocked the door and entered and found that he had gotten tangled in the tether and hanged himself. The school doesn’t know how long he was hanging there, but by the time they found him it was to late to bring him back.

        I realize this is a very extreme example, but it isn’t the only one, and the mother never knew they were locking him in there as the default rather then try to deal with his triggers and make the environment more sensory friendly for him. No child, or parent should live in fear that they could be next. Locking a disabled child in a padded closet is not therapeutic, just as shock treatment and aversives such as disallowing food for unapproved behaviors is not therapeutic, it is abuse and/or torture. Nobody should be denied basic unalienable rights, life, liberty and pursuit of happiness. That applies to the disabled also.

      • Audrey December 13, 2012 at 22:32 #

        I understand what you’re saying, but I’m not sure how it fits with my argument. I am not pro seclusion and restraint. I am concerned about a specific technical aspect of this law. Your example has to do with a boy who was being S/Red without his mother’s knowledge. The part of the law I’m talking about prevents parents from planning and entering into a contract with the district about how S/R can and cannot occur.

        The proposed law does allow for S/R in emergency situations. It also bans planning how S/R is used in emergency situations.

        Right now, a lot of kids have notations on their BIPs or IEPs about how S/R should be used if there is an emergency. (For example, “If staff have to physically hold Robert back from completing eye-gouging behavior, Robert’s parents will be contacted within 60 minutes and a live meeting will be scheduled within 72 hours to review and amend preventative and deescalation plans.”) If the law went into place, the school would still be allowed to use S/R in emergencies, but parents would no longer be able to negotiate a legal contract (such as an IEP) that specifies how things should go down because S/R can’t be referenced on the IEP or BIP. The legal contract is powerful and schools are very hesitant to violate it.

      • Lara Lohne December 13, 2012 at 20:00 #

        Good point Matt. On the flip side of that, it could be preconception as to an individual’s ‘level of functionality’ that might be part of the issue as well. I read about one autistic mom’s view of using the terms high functioning versus low functioning yesterday courtesy of Karla and it reminded me that for many, many autistics in the world, their disability is invisible or hidden by them under a veil of functionality that is really only like a wig they wear when out in public. It looks normal and natural, but as soon as they get home it comes off because it’s uncomfortable and causes great distress for them to wear.

        I have a good friend who has an adult child with autism. He isn’t as severely affected as my son, he didn’t ever do the rocking thing, but he has a harder time then my son with self regulation. Instead, he bottles everything up inside until he can’t bottle up anything else and then he loses control completely. He was removed from a public school situation a few years ago because they did not have the ability to manage him and he got too big for his mother to manage him as well. So he was placed in a group home which was also private schooling for developmentally challenged teen boys. She had him on weekends, and they had counseling sessions together every week, but other then that, he spent his time at the group home.

        He is still in high school due to graduate next June, has aged out of the group home placement so is back living with her as of April just before he turned 18. They tried to make the transition as gradual for him as possible. He still is not able to self regulate very well, unable to recognize the warning signals that he should take a break and unload with a sensory friendly activity and so he acts out. He actually has an excellent counselor at school who will not allow him to act out, but insists that he learn to figure out when enough is enough, to tell someone so that he can be removed from the over stimulating environment before he loses control.

        These are the same skills my son is learning now and has been learning since he was about 4, to self regulate, ask for a break when he needs one, basically to be his own best advocate. Perhaps being more severely affected helps my son, because his disability is a bit more obvious so perhaps with him more severe behavior is tolerated from him, also he is still very young, but things may change too, and nobody can say for certain if he will be able to continue in a public school setting.

        Things have changed significantly from when my friend’s son began school and now, and it’s really a shame that my friend’s son didn’t have the same opportunities for learning, not just academics, but self regulation and advocacy as well, that my son has now. In a way, he was a guinea pig for the current elementary school aged autistics, but unfortunately he was one of the ‘failed’ experiments, and nobody really knew what to do with him, or for him, because he seemed so ‘normal’ as opposed to my son who will rock in the corner, hum, or stamp his feet repetitively really fast when anxious. With my son, perhaps his acting out is more ‘acceptable’ then for my friend’s son, because the disability in my friend’s son was not quite so obvious so it was assumed he could handle more, when he actually couldn’t.

        Perhaps much of the issue is trying to differentiate between higher functioning and lower functioning and making accommodations for each, and we should instead assume either better at faking it then not and realize everyone on the spectrum as an ‘enough is enough point’ and learn to differentiate when that point is reached so we can avoid the acting out behaviors all together and the need for restraint and/seclusion would be completely unnecessary.

Trackbacks/Pingbacks

  1. behavioral emergencies « deemagclinic - January 16, 2013

    [...] Which Congressman Is Blocking Bill That Would Protect Kids with Autism? (leftbrainrightbrain.co.uk) [...]

  2. MN-02 : Kline Gets More Attention » MN Political Roundtable - April 9, 2013

    [...] Georg Miller (D-CA-11), the sponsor of the bill is quoted by ABC [...]

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

Follow

Get every new post delivered to your Inbox.

Join 1,129 other followers

%d bloggers like this: