Thursday, October 10, 2013

Quick Points for Effective #Autism Advocacy

Since Beans school incident recently I have become all that much more aware of how school improperly handles children with needs they don't understand.  I am seeing a re-occurring theme that I find so unsettling.

It's the over-correction, under-supportive, non compassionate, non empathetic way that schools often view, and treat our children.

It seems so common that I find most parents don't even notice it.  They just see the way their child is treated as the way it is.  It doesn't have to be. Most find what happened to my son to be appalling, but what they don't understand is that if their child is being restrained at any point in their day that could easily be their child.

I have written a lot about behavior supports, and such, and will include those entries at the end of this entry for a reference to those that may not have seen it. As a quick reference, here are some points I'd like people to remember when dealing with the school, and autistic children.

* If your child is struggling in any way with school personnel, and behavior request a Functional Behavior Assessment. Don't think that it would cause too much trouble, or think that just because a certain para is working with your child that they'll be okay. Don't let the school make you feel that they're doing so much that you should be grateful, and not ask for more. That was the biggest mistake I made, by far.

* Remember, behavior is communication. Most behaviors exhibited by an autistic child at school are due to high anxiety, and frustration from not having what they need to be successful.

* A FBA will identify those needs, and attempt to meet them, which will change, or replace the behavior. Not because the intent is to change behavior, but rather to meet the needs of the student through positive behavior supports.  When needs are met- the behaviors change.

* Understanding  the why behind the behaviors is paramount to meeting the needs of a student with autism.

* A behavior plan can be drawn up, and added to the IEP after the assessment. Do not let the school tell you they don't need to add it to the IEP. They do, or they don't have to technically follow it.

* If you child is throwing chairs (for example, because I have seen a few of those lately) we don't need to focus on the behavior itself, ie the damage it causes, or how wrong it is.  We need to figure out why the child is so upset that they would do that. Why is that his/her go-to tool?  Children do the best with what they have at any given time. They aren't purposely trying to be defiant for the sake of defiance.

*Keep in mind that anxiety can be like a can of shaken soda pop. There can be an incidence where the child is 'shook up' in their day, and they build pressure until one tiny thing opens up top, and they explode, looking to the rest of the world as out of nowhere.

*I find executive functioning issues to be at the root for most kids on the spectrum.

* For nonverbal kids who are profoundly autistic I see a lot of very serous efforts to over-correct, and micromanage their body, and behavior. This is not okay. They are individuals, not toys you can program to do what you want. If you tell them how to manage every aspect of their lives, from when to sit, stand, potty, draw, stim, eat, then you are going to get a destructive response.

*Positive Behavior Plans are not about compliance. I hate that word. They are about meeting the child's needs in a way that the behavior automatically changes, because it no longer serves a purpose.

* No one has the right to put their hands on your child unless they are seriously about to hurt themselves, and even then they need to use de-escalation procedures, rather than actually restraining a person. An actual restraint is almost never necessary if the staff is well trained in how to handle special needs students. 

* Meltdowns, and removal from classrooms are not, and should not ever be considered a normal  part of ANY child's day. If these things are happening at any level of frequency this is an indication that the child's needs are not met.

* Behavior that results from a child's disability cannot be punished away. The school must address any manifestation of the child's disability, as per their civil rights.

* At any point the staff at a meeting, (formal or informal) tell you that they don't do this or that, because it isn't their policy ask to see said policy. Don't just take their word for it. If they have a policy for anything it should be written, and they should be able to show you.

Managing Negative Behaviors With Autism and ADHD

What is Executive Functioning?

How This Aspie Mom Preps for IEPs

My Email to Bubby's Special Ed Dept- an example of educational advocacy

Understanding the Why When Teaching Autistic Children

Back to School IEP Tips, and Ideas

Why Spanking is Harmful


  1. Replies
    1. I agree! This is awesome! Very helpful to general education teachers, special education teachers, and parents. The only peeve I have about this blog is the lack of people first language being used. It should always be the person first (i.e. "children with autism" NOT "autism children". Otherwise I think this is a great blog post.

    2. Thank you, but I do that on purpose. I am an autistic person, not a person with autism. I hate being referred to that way. I have the disorder you're attempting to define, with all do respect. Please, read here for more info on how us autistics feel about person first language.-

    3. Thanks for sharing that link with me. It is interesting and opens a gate to different perspectives.

  2. Even with our IEP, I found they did nothing more than try to over-correct and micro-manage every "incident" where there was a "behavior issue" or my ABSOLUTE MOST HATED concept of "non compliance". It's becoming painfully obvious that NO school is being held responsible for not meeting an autistic child's needs. I can't even tell you how many IEP meetings I had with various people (new ones every single year) who wanted to "fix" him or focus on the behavior issue instead of WHY he was doing the things he was doing. I even had a "special education director" tell me that him curling up in a ball to block out what he felt was over stimulation was "not acceptable behavior". ENOUGH. We pulled him out of public school in favor of K12 online school. So far it's been perfect for him and he actually is allowed to get school work done without having to follow a zillion different stupid rules designed to make him behave.

    1. It can be really tiring always feeling like one is fighting the system. For some, the best thing to do is to withdraw their child(ren) from school, and carry on with meeting their needs in a more ASD friendly environment.

  3. I have never heard of a fuctional behaviour assesment, my child is 6 and is on his 2nd fixed term exclusion since going back to school in September due to his behaviour (throwing chairs, attacking staff members and disrupting learning) he has not been in the classroom for the best part of 6 months and we are currently waiting for his draft statement to be issued so that we can request specialist placement for him but the full statement will not be issued before Christmas. I just can't take another 8 weeks at least of sitting at home waiting every day for the phonecall telling me to go and collect him because he is being excluded again, I have a meeting tomorrow at 10 so any advice would be great. Thank you

    1. I'd be happy to help. You can also message me on my FB page or email me, though I don't tend to check that email as often, so it may not be so quick.

      The wording of your reply makes me think you may be from the UK, in which I am not quite sure of the laws there. For a US student going through what you have described I would tell the parent to email the school (principal, special ed teacher, and anyone else pertinent) requesting a Functional Behavior Assessment-

      I would also ask if they had an IEP, and if not to request an evaluations for special ed services, as well. They HAVE to do both if requested, provided you have not asked within the last 3 yrs, which wouldn't apply to you, since your son is only 6.

      I would think that they need to try behavioral strategies before moving him to a more restrictive environment. Here, we have a law against moving children to special placements, away from their same age typical peers, unless it is detrimental to the child's education. If they have not reasonably tried to address your son's behaviours, then they really need to try before moving him.

      A functional behavior assessment would provide faculty with a realistic picture of why your son is getting upset, and will provide an opportunity to figure out what supports he needs to be successful in the classroom.

      If your son has a formal diagnosis of AS, ASD, ADHD, or anything that could be contributing to his behaviors they cannot penalize him for any behavior that directly, or indirectly manifests from his disability. They must address it in order to meet his right to a free, appropriate education. It's unacceptable that they see it fit to call you to come get him when he has a meltdown. Not only is he not getting treated fairly, but that will reinforce his behavior to continue. He know (consciously, or not) that if he gets too upset he can just toss a chair, and he gets to go home. That is the worst way for them to address his upset.I'm sorry that the school is putting so much pressure on you this way. I know how stressful it is when awaiting that call. It's one of the worst overstress I've ever encountered.

      This site seems to have lots of info if you're from the UK-

      Good luck!


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