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How to Get the School to Meet Your Autistic Child's Needs

"From experience with an autistic son (high functioning) with an IEP in our school district, it has been a nightmare this past school year. Due process is not at all a fair and objective process if or when you run into problems and or violations. It is costly going against county attorneys that are well versed on tactics to intimidate and bully parents in attempts to make them go away. For anyone in which the process does work, you should feel very fortunate. How can I get the IEP process to work for my child so we don't go through this terrible dilemma again next year?!"

An evaluation for your child with ASD level 1, or high-functioning autism (HFA), should determine his special education needs and will generate an appointment for a team meeting to develop an Individualized Education Program (IEP). The IEP is the document that will detail, in writing, an individualized approach to meeting the unique needs of your youngster. The team should include:
  • A school representative who can make decisions about the delivery of services
  • One regular education teacher
  • One special education teacher
  • Someone who can interpret the evaluation results as they apply to your child's educational instruction
  • You and your spouse
  • Other participants with special expertise or knowledge of your child

Your child may also participate if he/she chooses to be present. Participants with special expertise may include a parent-advocate knowledgeable about the IEP process, a professional consultant who specializes in developing IEPs, or a professional consultant who specializes in autism spectrum disorders. Finding a specialist can be a crucial issue, and it can be frustrating to both moms and dads and school officials when one is not accessible.
 

It may not be realistic to expect that an educator experienced in teaching children with Aspergers and HFA will be teaching your child. Because you know your youngster best, you may become fiercely protective and defensive of what you believe your youngster needs. On the other hand, most willing and cooperative school districts may lack such expertise and may be of the position that they are doing all they can.

If you have requested that your school district evaluate your youngster, the district must comply, and this process should be completed within sixty days after your first written request. After this, the district will ask that you sign a “Permission to Evaluate” form. The evaluation should be completed within sixty days after your original written request, not sixty days after you've signed the permission form. Once the evaluation is completed, a team meeting should be convened to review the evaluation. You should receive your youngster's evaluation well in advance of the team meeting, but no later than ten days prior to such a meeting. This team meeting may also serve as the first IEP meeting if you wish.

If your youngster has been deemed eligible for services, IEP team members should be identified, and the first meeting should occur within thirty calendar days of the original determination of eligibility. The completed IEP must then be implemented within ten school days. It must also be reviewed yearly and can be revisited in a team meeting upon your request outside of the annual meeting date. The IEP must also be in effect for your youngster at the beginning of each new school year.

The initial IEP meeting is the time and place to develop the document that will be the blueprint for your youngster's educators. The draft document should be transcribed into the final document immediately after the meeting. It should include:
  • acknowledgment of your child's eligibility
  • area for you to sign, acknowledging that the school district has provided you with a copy of your rights during the process, known as “procedural safeguards”
  • basic information such as your contact numbers and address, your youngster's date of birth, and anticipated year of graduation
  • cover sheet with a sign-in page listing all participants
  • list of “special considerations,” such as visual or hearing impairment, behaviors that impede your youngster's ability to learn, and communication issues
  • summary of your youngster's needs
  • summary of your youngster's strengths, passions and interests

A strong IEP team should be able to find a balance between your youngster's strengths and needs. Too often, such meetings can focus upon issues that others may perceive as “behavioral” or emotional disturbances. When this occurs, teams get sidetracked and lose their focus. Teams may digress and deteriorate. Moms and dads may leave feeling angry or upset, and the self-fulfilling prophecy is perpetuated. For this reason, and particularly in very sensitive situations, it is advisable to have a professional in attendance that fits the bill of “other participants with special expertise or knowledge of your child.” In partnership with the team, this person can help keep things focused on your youngster as a youngster first and foremost.
 

The next step is to set IEP goals that are specific to your child's strengths and needs in order to track your youngster's educational progress and ensure that the team is implementing what it committed to doing. The goals should be realistically achievable for your youngster and written in such a way that they are easy to track or “measure,” in order to see your youngster's growth and keep the team accountable. For example, an appropriate goal for a child with Aspergers or HFA of any age might be in the area of developing computer skills. While this may sound rather generic, the spin here is to make it specific to your youngster's disorder.

The purpose of the goal should be clearly stated, such as a goal for accessing the Internet: “The child will develop skills to use a computer to communicate, to gain information, and to increase social relationships independently three out of five times.” Next, objectives to meet the goal should be identified in sequence. The sequence for the computer goal might look like this:
  • The child will create and access a file and store information she wishes to save in the file.
  • The child will learn methods to access social interaction through electronic media (email).
  • The child will learn the functions of the computer, including turning the computer on, signing on to the Internet, and using the keyboard and other functions while exploring her passions (such as searching for information about insects as they relate to a lesson plan).

This ensures accountability as well as consistent support. A method and schedule of evaluation for each goal objective should also be included. For example, the method for the last objective listed might read, “During computer learning opportunities, the child will be afforded opportunity to increase social interactions by learning to use e-mail and other communication avenues.”

A goal for enhancing self-advocacy might address your youngster's ability to identify and communicate her sensory sensitivities in the school environment. A goal or objective might read, “The child will be able to communicate in a socially acceptable manner the specific change she requires in her educational environment four out of five times.” The method should include supporting the youngster to identify environmental stimuli that are irritants and detract from learning.

The IEP should also list “program modifications and specially designed instruction” that may include elements incorporated into goal areas, which team members should bear in mind. Such a useful list may include examples like:
  • Allow extended wait time and processing time.
  • Be consistent with the expectations established for the child.
  • Explain directions clearly, in steps and with visual representations.
  • Limit or eliminate visual and auditory stimulation and distractions in the learning setting.
  • Provide advance notice of schedule and special situations.
  • Provide an individual, weekly schedule to follow.
  • Use photo depictions where possible instead of cartoons or drawings.

 
The IEP document will also indicate the projected date for implementation of services, the anticipated duration of services, and any revision dates. Specifications addressing how the school district intends to report IEP goal progress should be clearly stated. There must also be a statement reflecting why your youngster's current educational placement represents an inclusive environment as fully as possible as opposed to an alternative placement.

Some moms and dads and school districts are possessed of more experience and greater expertise in educating kids with Aspergers and HFA than others. There will always be kinks to iron out in the IEP process, and these can usually be addressed at the annual IEP meeting or at a requested reopening of the IEP. When moms and dads encounter resistance from a school district it is usually because the district:
  • Doesn't “see” the challenges as a viable diagnosis
  • Believes your youngster's challenges to be exclusively behavioral issues
  • Believes it is meeting the goals and objectives of the IEP to its best ability

Where moms and dads resist a school's efforts, it is usually because they are extremely frustrated that the school district doesn't understand the disorder and, as a result, doesn't “get” how to educate their youngster. Ignorance can be used as an initial excuse, but it is not an acceptable long-term excuse. School districts have a responsibility to make provisions for the continuing education of educators and to seek outside technical assistance and expertise as necessary.

Moms and dads have a responsibility to serve as a resource concerning their youngster's strengths and needs, as well as to direct the district to viable resources and expertise wherever possible. When the circumstances of educating your youngster through proper implementation of the IEP goals and objectives become less than satisfactory, you have recourse available to you, provided by the IDEA law.

You may request an Impartial Due Process Hearing at any point in which disagreement arises about the delivery of education to your youngster. This includes your youngster's identification, evaluation, placement, or implementation of the IEP.

The Impartial Due Process Hearing takes place with an “impartial hearing officer.” The hearing officer is the “fact finder” who hears all the evidence and makes a ruling on the issues presented during the meeting. Such individuals are employed by your state government's education office of dispute resolution and are of varied background and position, such as former education administrators, attorneys, or psychologists.

A hearing is to be held within thirty days of the request. The school district must forward a mother/father's request to the office of dispute resolution within five days of its receipt by the district office. The hearing officer's decision must be issued within forty-five days of the request for the hearing.
 

There are often delays in scheduling or a hearing officer may not be timely in making his final determination to settle a dispute. During the dispute, the youngster in question is to remain in her current educational placement. The hearing officer's decision may be appealed and taken to an appeals panel within thirty days. The appeals panel must render a decision within thirty days after the review request.

Such measures will be entirely avoidable, but if a mother/father remains dissatisfied after exhausting local administrative avenues, action may be brought in any state court of competent jurisdiction or in any district court of the United States, as provided for in IDEA. There is no statute of limitations for commencing such action in federal court, but it is advisable to file as soon as possible. There may be time-frame limitations for filing a case in your state court.

Moving to file a case is stressful, frustrating, and draining for all parties involved. However, court rulings can set precedent for changes in law to the benefit of all. Any time significant change has occurred in how kids with differences are educated, it has been at the instigation of passionate moms and dads simply wanting fair and equal opportunities for their kids.

You may be a persuasive advocate when interacting with your Aspie's school district. You just may be the person to educate and enlighten the professionals in your district if they require a better understanding of Aspergers and HFA. In some extreme instances, families have moved to another school district or another state in order to have their child attend a certain school program. Unfortunately, in addition to the stress on the whole family that this type of upheaval can cause, it also allows school districts to remain uneducated about how best to support children with autism spectrum disorders.


Resources for parents of children and teens on the autism spectrum:
 
 
More articles for parents of children and teens on the autism spectrum:
 
Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

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Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

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Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

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Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

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Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here to read the full article...

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Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...
 
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A child with High-Functioning Autism (HFA) can have difficulty in school because, since he fits in so well, many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive.

Click here for the full article...
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The 3 Interventions to Prevent Meltdowns in Kids on the Autism Spectrum

"Mark, You refer to 'meltdowns' quite frequently in your articles. Is it not similar to a tantrum... if not, what can be done to prevent them?"

A meltdown is not identical to a tantrum (although there is an overlap on occasion). From a biological standpoint, a meltdown is an emotional outburst wherein the higher brain functions are unable to stop the emotional expression of the lower (i.e., emotional and physical) brain functions. 
 
Kids who have neurological disorders are more prone to meltdowns than others (although anyone experiencing brain damage can suffer from meltdowns too).

From a psychological standpoint, there may be several goals to a meltdown, which may or may not be the "rewards" that are consciously desired by the youngster. To many parents and teachers, these goals may seem irrational, inappropriate, and sometimes criminal. 
 
To kids familiar with - or trained to recognize - the psychological causes of such behavior, however, there are clear emotional, cognitive, behavioral, and biochemical correlates to meltdowns.
 
==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

The three major interventions that are usually most effective in preventing a meltdown from manifesting in children with High-Functioning Autism (HFA) include (1) managing emotions, (2) a sensory diet to maintain optimal sensory regulation, and (3) visual supports.

1. Managing emotions:

Most often, the youngster's feelings are way too big for the situation. Managing felt emotions does not come automatically, but can be learned over time with systematic instruction. CBT is one example of an effective therapy for managing emotions.

2. Sensory diet:

Children with High-Functioning Autism usually do not have sensory systems that regulate automatically; rather, they must discover how to keep themselves regulated. This is most often accomplished by employing a sensory diet.

Just as a youngster needs food throughout the course of the day, he needs sensory input – and opportunities for getting away from stimulation – spread out over the whole day. A “sensory diet” is a carefully designed, personalized activity plan that provides the sensory input an autistic child needs to stay focused and organized throughout the day. In the same way that you may soak in a hot tub to relax, kids on the autism spectrum need to engage in stabilizing, focusing activities, too.

Each ASD youngster has a unique set of sensory needs. Generally, a youngster whose nervous system is causing him to be hyperactive needs more calming input, while the youngster who is more under-active or sluggish needs more arousing input.

The effects of a sensory diet are usually immediate and cumulative. Activities that perk up your youngster - or calm him down - are not only effective in the moment, but they actually help to restructure your youngster’s nervous system over time so that he is better able to:
 
(a) handle transitions with less stress,
(b) limit sensory seeking and sensory avoiding behaviors,
(c) regulate his alertness,
(d) increase his attention span, and
(e) tolerate sensations and situations he finds challenging.

3. Visual supports:

 “A picture is worth a thousand words” is the absolute truth. Although each child on the autism spectrum has a unique experience, processing written and spoken words is not considered to be her “first language.” Visual supports can be anything that shows rather than tells. Visual schedules are often used successfully with many ASD children. 
 
Having a clear way to show beginnings and endings to the activities shown on the visual schedule helps the child to have smooth transitions, thus keeping a meltdown from gathering momentum. For the best results, visual supports need to be in place proactively rather than waiting until the child's behavior unravels to pull them out.
 
 
Resources for parents of children and teens on the autism spectrum:
 

==> Videos for Parents of Children and Teens with ASD
 
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COMMENTS:

Anonymous said… Meltdowns are not always "temper tantrums." I am a certified Aspie and my meltdowns usually have nothing to do with temper to anger. Meltdowns are the result of overstimulation in some area. It could be related to sensory issues such as a certain noise, or certain colored lights, or it could be a reaction to an emotionally charged situation (we don't understand emotions so when emotions are high it is unnerving and we can't handle it). I recently wrote about a meltdown on my own blog The Christian Aspie. It is a first hand account, through the eyes of an Aspie. It is horrible to experience. There is a lot of anxiety and stress, an out of control feeling. I have had milder meltdowns when people lie to me. I have also had rather serious meltdowns when I have just been overloaded in one way or another (usually sensory related). The thing to remember is that 1. We can't help it. Sometimes I have to stomp or flap my hands to release the pressure. 2. There is nothing you can do about it except to try to get the person into a sensory friendly (low sensory input - low lights, muted sound, isolated, etc) area.

Anonymous said… I think a lot of it is semantics. The closest term to describe a 'Meltdown', is a severe temper tantrum, altho a temper tantrum in a 'normal' child is generally caused by a child that is simply not getting his way and has learned that if he pitches a big enough fit, he will get his way. No Aspie or Aspie parent wants that perception to be used to describe an Aspie meltdown. I think there is also a big difference between a 'meltdown' and a 'shutdown', depending on how the aspie deals with the anxiety and often overwhelming experience of trying to navigate the 'normal' world. Some aspies INternalalize their feelings and emotions, and some EXternalize them. An internal 'meltdown' I would describe more as a 'shutdown'. They may be just as devastating to the child, but don't have the same outward effect on those around them, as a full-blown 'meltdown' can have. Especially if it happens in public. In my opinion, the term 'meltdown' has become way overused by some parents to describe anytime their child, aspie or not, cries or doesn't behave perfectly. I often want to tell these parents, "you apparently have never seen a real meltdown". In our experience, Mark Hutton described a meltdown perfectly, and I think the overuse, and misuse of the term minimizes what Aspies and their caregivers deal with daily. Thank you Mark for clarifying this. 

Anonymous said... A meltdown can be very subtle. Essentially they are overwhelmed with emotion or sensory input. Early on this can be expressed as irritability (early in the meltdown). It can go into a tantrum/screaming fit or just as easily into what I call a shutdown (retreating somewhere "safe" and trying to block the world out).

Anonymous said... A meltdown is NOT the same as a tantrum. A meltdown is involuntary, it is not under the child's control, and it is usually due to sensory overload, something important getting changed unexpectedly, or some kind of "straw that broke the camel's back," when somebody's been under chronic stress and there's a final incident that they just can't take anymore. Good ways to avoid one are to tell a child in advance if something in their plans or schedule is getting changed--not waiting until the last minute. Figure out what kind of environmental/sensory stresses cause them sensory overload, and avoid those, or make sure they have a way to escape if they need to.

Anonymous said... I found my meltdowns used to occur mostly in social situations that were noisy -- too much noise, too many people talking, too much input. I have learned to handle them by staying to the side of a room, so it is not all around me and occasionally having a time out (from the noise) where I would go outside or to the bathroom & just breath and calm down. But them I am over 50 and have had many years to figure out what works. It is not a tantrum which, as I understand it, comes from anger and not having ones own way; it seems to be a sensory overload which explodes.

Anonymous said... Tantrums are typically from not getting their own way. Meltdowns or at least with my son are usually because he got overwhelmed with something and doesn't know how to properly express it to me. Kudos for finding something that works for you!
 
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