"What advice would you have for parents of an autistic child exhibiting sensory regulation difficulties?"
A child's ability - or inability - to regulate sensation (i.e., the process of noticing, organizing, and integrating information from the environment and the body, and then processing and responding appropriately) significantly contributes to general behavior patterns. Problems with regulating sensory information (e.g., taste, sound, touch, smell, body movement, or body position) may lead to patterns of:
hypo-sensitivity or sensory-seeking behaviors (e.g., needing high levels of sensory input such as a loud noise, firm touch, repeatedly crashing into walls, banging toys in order to register the sensation, etc.)
hyper-sensitivity or sensory-avoidance (e.g., over-reacting to bright lights, loud noises, being held, etc.)
a mixed pattern of sensory-seeking and sensory-avoidance
Asperger's and High-Functioning Autistic kids with poor sensory regulation show a wide range of problems across several domains, including internalizing behavior problems, externalizing behavior problems, problems in many daily activities, and problems in emotional and attention regulation.
Here are some of the behavioral problems associated with sensory processing difficulties:
Academic problems: The youngster may have mild to severe learning disabilities, and problems with generalizing new concepts and skills.
Difficulties with self-regulation: The youngster may have difficulty with mood stability or maintaining an optimal level of arousal. She may be unable to calm herself down after an activity - or get herself going for an activity. Her arousal level may fluctuate minute-to-minute or day-to-day.
Difficulty with transitions: The youngster may throw a temper tantrum, be uncooperative, or experience heightened anxiety when stopping one activity and starting another. Also, he may have a difficult time leaving a particular place or going to the next task of the day (e.g., bath time, bed time, dinner, etc.).
Emotional problems: The youngster may have significant self-esteem issues, be overly-sensitive to criticism, transitions, or stressful situations. Also, she may have difficulty relating to others or understanding her own actions, motivation, or behavior.
Excessive energy level: The youngster may be unable to sit still, constantly on the run, or engage in risky behaviors.
Frequent hand switching: The youngster may not have a dominant hand for writing by age 5, may switch hands often while cutting or writing, or may throw a ball with both hands.
Impulsivity: The youngster may be unable to control impulses (e.g., to jump out of his seat) or his behavior. In addition, he may be aggressive or frequently "blurt" things out without thinking first.
Low energy level: The youngster may appear lethargic, uninterested in engaging in most activities, or be sedentary most of the day.
Low frustration tolerance: The youngster may become upset, yell or throw a temper tantrum at the slightest thing that does not go her way. She may give up on tasks easily if they are difficult for her.
Motor coordination problems: The youngster may appear clumsy, slouch, rest his head on his hands during desk work, exhibit awkward movements, or have frequent accidents.
Motor planning problems: The youngster may have difficulty with sports, riding a bike, doing jumping jacks, clapping, handwriting, balance, using eating utensils, or getting dressed.
Poor eye-hand coordination: The youngster may have sloppy handwriting, difficulty cutting or drawing a straight line, catching a ball, or tying shoes.
Resistance to the unfamiliar: The youngster may experience anxiety or refuse to meet new people, try new foods, participate in new activities, or sleep in a different environment.
Short attention span: The youngster may have difficulty concentrating on one activity or task for any length of time, and she be distracted by every sight, sound, smell, or movement she sees.
Social skills deficits: The youngster may have a difficult time relating to his peers and sharing. He may isolate, get aggressive, and be overpowering or bossy in order to help himself regulate and to control his sensory environment.
Uncooperative with activities of daily living: The youngster may have difficulty brushing his teeth, eating, participating in certain activities, getting dressed, going to bed, or taking a shower.
A child's sensory sensitivities will indeed affect his or her behavior and general temperament, but the reverse can also be true (i.e., the child's temperament may affect how well or poorly he/she deals with sensory sensitivities). Here are 9 temperaments that may be associated with either sensory-seeking behaviors or sensory-avoidance:
1. Sensory Limit: This is related to how sensitive your youngster is to physical stimuli (e.g., sounds, tastes, touch, temperature changes, etc.), and refers to the amount of stimulation needed to elicit a response (positive or negative) in him or her. For example:
Is your youngster a picky eater, or will he eat almost anything?
Does he startle easily to sounds?
Does he respond positively or negatively to the feel of clothing?
Does your youngster react positively or negatively to particular sounds?
2. Predictability: This trait refers to the regularity of biological functions (e.g., appetite and sleep). For example, does your youngster get hungry or tired at predictable times, or is he or she unpredictable in terms of hunger and tiredness?
3. Perseverance: This is the length of time your youngster persists in activities in the face of difficulty. For example:
Is she able to wait to have her needs met?
Does she react strongly when interrupted in an activity?
Does she persist in an activity when she is asked to stop?
Does your youngster continue to work on a puzzle when she has problems with it, or does she just move on to another activity?
4. Disposition: This is the tendency to react to things primarily in either a positive or negative way. For example:
Is your youngster generally serious?
Is he generally in a happy mood, or does he tend to focus on the negative aspects of life?
5. Emotional Energy Level: This is the intensity of a response, whether positive or negative. For example:
Does your youngster get upset in a very strong and dramatic way, or does he just get quiet when upset?
Does he react strongly and loudly to everything - even relatively minor events - or do most things seem to roll off of his back?
6. Physical Energy Level: This refers to how active your youngster is in general. For example:
Is he always on the go, or does he prefer sedentary quiet activities?
Is your child content to sit and quietly watch?
Does she have difficulty sitting still?
Does your child seem to always wiggle, squirm or pace?
7. Attention Level: This is the degree of concentration and paying attention exhibited when your youngster is not particularly interested in an activity. This characteristic refers to the ease with which external stimuli hampers the ongoing behavior. For example:
Does he or she become sidetracked easily when attempting to follow routine or working on some activity?
Is your child easily distracted by sounds or sights?
Is your child easily soothed when upset by being offered an alternate activity?
8. Approach/Withdrawal: This refers to the youngster’s typical response to strangers or a new situation. For example, does she eagerly approach new situations or people, or does she seem hesitant and resistant when faced with new situations, people or things?
9. Flexibility: This is related to how easily the youngster adapts to changes and transitions (e.g., switching to a new activity). For example:
Does he take a long time to become comfortable in new situations?
Does he have difficulty with changes in routines, or with transitions from one activity to another?
Sensory processing difficulties in kids on the autism spectrum often have a significant impact on the parent-child relationship. A child experiencing these difficulties can react to his parents or his environment in ways that are unpredictable or seemingly irrational. For instance, a youngster who is overly-sensitive to stimuli can react negatively to the parent's voice or touch, or from a tag in his clothing. As a result, the parent can be confused by the youngster’s reactions - and experience a sense of incompetence in his or her parenting skills.
Moms and dads of kids with sensory processing difficulties report higher levels of parenting stress than parents of "typical" children. As sensory processing difficulties increase in severity, so does the level of parental stress.
Early identification of sensory processing difficulties, and an increase in referrals for occupational therapy, may lead to a reduction in childhood problems and parental stress. Also, new pathways for multi-disciplinary evaluation and treatment that emerge as the mental health field becomes more aware of the signs and symptoms of sensory processing difficulties in kids on the spectrum may lead to a reduction in childhood problems and parental stress.
“Do I have any rights if our school district refuses to do an evaluation on my son with high functioning autism? And what should I do if the school determines that he is not eligible for special education?”
Parents have a legal right to request that the public school evaluate their youngster for special education services. The Individuals with Disabilities Education Act (IDEA) gives them that right. Through local school districts, each State must “identify, locate, and evaluate every child who may have a disability requiring special education services.”
If you suspect that your son has a disability, you have a right to request a full, comprehensive, individual, multi-disciplinary evaluation. You will need to request an evaluation in writing. Be sure to send copies to the principal and the coordinator of special education. Also, retain copies of all correspondence relating to your son, and follow up with the school principal on the status of your request.
Some States will not consider your letter as sufficient permission to evaluate. As an alternative, the State may require you to sign a school district form before considering an evaluation. The date of your signature on the form is the date used to establish the evaluation time-frame.
Below is a sample letter requesting an evaluation:
__________
Date
Dear (name of coordinator of special education),
My son, John Doe, is having a very difficult time understanding the classroom material and completing homework. I’m requesting that he be evaluated for special education services. John is a 5th grader in Ms. Simpsons classroom at Delaware Elementary School.
I understand that the information collected during current interventions with John will be completed, and a meeting will be set up within the timeline as required by federal law. My signature on this letter gives my consent for John’s evaluation. I look forward to hearing from you soon. I’m available by phone on any weekday between 8:00 AM and 5:00 PM.
Sincerely,
Parent signature
Parent name, address, phone number
__________
If the school district refuses to do an evaluation on your son, or if they conclude he is not eligible for special education services under IDEA, you still have other rights. You may be entitled to an independent evaluation at the school district’s expense, or you have the option to pay for an evaluation by a professional of your choice.
As part of the dispute-resolution process, you have the right to request mediation, to file for a due process hearing, or to file a complaint. When using these processes, your case is likely to be more convincing if informal methods of conflict resolution are tried first.
IDEA requires school systems to have procedures in place to assist you in resolving disputes through mediation. Mediation allows you and the school district to talk to an impartial mediator who guides the discussion and helps the parties to agree on legally binding solutions to the conflict (costs of mediation are paid for by the state education agency).
The state complaint process requires you to file a letter with the state education agency outlining the violation of Part B of IDEA. A copy of the complaint should be provided to the school district at the time the complaint is filed with the state education agency if the violation occurred in the school district.
IDEA gives you the right to challenge a school district’s decision through a due process proceeding. You may request a form from the state education agency to file an “IDEA due process complaint,” which typically has 5 steps:
There may be a meeting called a “resolution session,” which provides an opportunity to discuss and resolve the problems in question. You and the school district can agree to waive the resolution session and use the mediation process as an alternative.
If a resolution is reached, the parties will sign a legally binding agreement. If not, an impartial due process hearing can be arranged.
The hearing process gives you the right to be represented by an attorney (which you must pay for), subpoena witnesses, present evidence, and cross examine witnesses. The “hearing officer” will make a decision on the matter.
If you dispute the decision of the hearing officer, you can go to court with a civil suit.
Even if your son is not eligible for special education services under IDEA, he may be protected by other laws: The Americans with Disabilities Act of 1990, and Section 504 of the Rehabilitation Act of 1973.
A formal evaluation is one of the first steps in getting an High-Functioning Autistic youngster the school services he needs. The school must evaluate the youngster if it knows or suspects he has a disability, which covers many attention and learning problems. However, sometimes the school will refuse to do an evaluation. Use the steps listed above if that happens.
In summary:
Ask the school why it refused to evaluate.
Call a meeting with the school.
Consider an independent educational evaluation.
Contact a Parent Training and Information Center (PTI).
File a due process complaint.
Make sure your request was in writing.
Request mediation.
Talk to a lawyer or advocate.
Consider filing a state complaint.
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.
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.
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.
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…
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...
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.
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.
