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Your Rights as a Parent of a “Special Needs” Child

Most kids with Asperger’s and High Functioning Autism experience problems in school, ranging from difficulties with concentration, learning, language, sensory sensitivities, and making/keeping friends. Young people with such “special needs” are usually entitled to receive additional services or accommodations through the public schools.

Federal law mandates that every youngster receive a free and appropriate education in the least restrictive environment possible. To support their ability to learn in school, three Federal laws apply specifically to special needs students:
  1. Section 504 of the Rehabilitation Act of 1973
  2. The Americans with Disabilities Act (ADA) (1990)
  3. The Individuals with Disabilities Education Act (IDEA) (1975)

Different states have different criteria for eligibility, services available, and procedures for implementing these laws. It is important for moms and dads to be aware of these laws and related regulations in their particular area.

1. Section 504 is a civil rights statute that requires that schools not discriminate against kids with special needs and provide them with reasonable accommodations. It covers all programs or activities – whether public or private – that receive any federal financial assistance. Reasonable accommodations include modified homework, provision of necessary services, sitting in front of the class, and untimed tests. Typically, kids covered under Section 504 either have less severe deficits than those covered under IDEA, or have deficits that do not fit within the eligibility categories of IDEA. Under Section 504, any child who has an impairment that substantially limits a major life activity is considered disabled (learning and social development are included under the list of major life activities).

2. The ADA requires all educational institutions (other than those operated by religious organizations) to meet the needs of kids with psychiatric disorders. The ADA prohibits the denial of educational services, programs or activities to children with disabilities and prohibits discrimination against all such young people.

3. IDEA is a federal law that governs all special education services for kids in the U.S. Under IDEA, in order for a youngster to be eligible for special education, he or she must be in one of the following categories:
  • autism
  • learning disabilities
  • mental retardation
  • physical disabilities
  • serious emotional disturbance 
  • traumatic brain injury
  • vision and hearing impairments
  • other health impairments

As a mother or father, you may request an evaluation of your youngster to determine his/her needs for special education and/or related services. The evaluation may include a behavioral analysis, educational testing, an occupational therapy assessment, psychological testing, and/or a speech and language evaluation. These are the steps that parents of special needs children need to take:
  • Keep careful records, including observations reported by your youngster's educators and any communications (e.g., notes, reports, letters, etc.) between home and school.
  • Meet with your youngster's educator to share your concerns and request an evaluation by the school's study team. Moms and dads can also request independent professional evaluations. 
  • Submit your requests in writing for evaluations and services.
  • Also, always date your requests and keep a copy for your records.

The results of the evaluation determine your youngster's eligibility to receive a range of services under the applicable law. Following the evaluation, an Individualized Education Program (IEP) is developed. Examples of categories of services in IEPs include speech and language therapy, physical therapy, occupational therapy, and/or the provision of a classroom aide. The parent does not determine whether the youngster is eligible under the law; however, the parent is entitled to participate in the development of the IEP. Additionally, the findings of the school's evaluation team are not final. Parents have the right to appeal their conclusions and determination. The school is required to provide parents with information about how to make an appeal.

Moms and dads of a special needs child should always advocate for their youngster, be proactive, and take necessary steps to make sure their youngster receives appropriate services. The process can be confusing and intimidating. Here are a few important points to consider:
  • If the school district does not respond to the parents’ request, parents can contact a U.S. Department of Education Office of Civil Rights Regional Office for assistance.
  • If the school district refuses services under the IDEA or Section 504 or both, parents can choose to challenge this decision through a due process hearing (i.e., a legal hearing in which parents and the youngster have an advocate who can help express the parents’ views and concerns). 
  • It may be necessary to retain your own attorney if you decide to appeal a school's decision. This attorney can take the school to court, but most schools that get contacted by an attorney will begin to cooperate with you. They would rather pay for your child's equipment than the cost of an attorney and a court case. 
  • Moms and dads should request copies of their school district's Section 504 plan. This is especially important when a school district refuses services.

Here is a summary of your rights as a parent of a special needs child. You have the right to:
  • ask for an independent educational evaluation at public expense when you disagree with the school district’s assessments
  • bring any person to an IEP meeting with knowledge of the child or the child’s disability, including advocates and attorneys
  • consent, refuse to consent, or revoke consent for special education for your child
  • file complaints, including state complaints, due process complaints, and disagree with parts or all of the IEP
  • list all of your concerns in the IEP
  • participate in the IEP meeting and have your opinions heard and noted
  • receive prior written notice when the school district proposes a change in your child’s placement or refuses your request
  • request a new IEP meeting be held within 30 days of a written request when an IEP is already in place
  • request that your child be assessed for Special Education without delay
  • review and receive copies of your child’s educational records

Kids on the autism spectrum who have “special needs” can't take care of themselves. They rely on their moms and dads to make sure they are protected. It can be stressful and difficult for parents if they don't know what their child’s rights are – let alone how to protect him or her. Parents can follow the steps listed above to protect the rights of their youngster.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

 ==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

 ==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

 ==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book
==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism


COMMENTS:

•    Anonymous said... My son needed big help with social issues at school, I ended up writing to the Minister of Education, Hon Anne Tolley at the time, only after her and Chester Burrows getting on board did I get help by our GSE. Then the following term the RBLT removed him from her books saying he was fine. Changed schools and the next school was brilliant.
•    Anonymous said... This is a very good article. Pay close attention to the keeping records part. You will have to fight for it. The school will want to collect "data"...so keep records of everything. If your school has an online program so you can look at your kids assignments and grades, print out the assignments and grades after every semester/quarter. Having that in my hand and pointing out that my child made all "A"s" when she did the work, and "F's" only when she didn't do the work (which was often.... any time she thought it was a stupid assignment, involved a lot of writing or she thought she couldn't do it perfectly) helped me finally get the 504 and some very needed accommodations. Be persistent, be a bitch if you have too, but stay on them. They have to respond to your requests in specific number of days, but often won't. Stay focused and know the prize will make a difference for your child!!
•    Anonymous said... We have a 504 for my daughter! Soooo helpful.

Please post your comment below…
By

How Important is a Diagnosis?

If you suspect that your child has ASD level 1 (Asperger's), even if he or she is an adult, should they seek a formal diagnosis?

Answer: It depends!



==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance
By

Making Your Child's Bedroom More Conducive To Sleep

“Our 5 y.o. boy has been diagnosed with autism (high functioning). Any suggestions on how to make his bedroom more favorable for sleeping? We have been told by the therapist that he may be over-stimulated by the digital gadgets, toys, games, etc., in his room – and that these items are distracting him from falling asleep. This is a plausible theory, because he will get out of bed late into the night to play around. Also, he is easily aroused by the slightest noises through the night.”

It is important that the bed and the bedroom are associated with sleep and are not associated with activity. When young people with High-Functioning Autism or Asperger’s have sleep problems, it is highly recommended that their bed and bedroom activity be limited to sleep only. Also, it's important to make sure that extreme changes in temperature are avoided during the night.



Increasing light is associated with decreases in the release of the neuro-chemical melatonin, which triggers sleep onset. Thus, it is important to get the sunlight flowing in the child’s room as soon as possible in the morning. Conversely, darkening the room at night is critical. When a child’s fear of the dark is an issue, behavioral psychotherapy may be necessary. I also recommend moving the clock so that the child is not watching the time while lying in bed.

Here are a few additional suggestions that will help facilitate a good night’s rest:
  • Cool colors (those from the left side of the color wheel) are thought to provide a sense of calm. Choose one of these for your child’s bedroom, and avoid bright, loud colors that are more exciting than soothing.
  • If your child needs a little light to sleep comfortably, consider adding a couple of nightlights or a dimmer switch rather than having him sleep with a lamp on all the time.
  • Loud pipes might be keeping your child awake when one person makes a bathroom visit in the middle of the night. Look for the cause of any clanging and banging, particularly in a bathroom that may be adjacent to his bedroom.
  • Make sure doors and windows are solid and secure, with no drafts or rattles. 
  • Make sure that rooms adjacent to your child’s bedroom are not home to stereos, televisions or other noisy electronics. Most modern homes don't have completely soundproofed walls, and the bleed-through noise may be keeping him awake.
  • Organize closets and keep your child’s clothing and other personal items in their places. A chaotic, messy room is stressful to the mind. 
  • Select light-blocking window treatments. Even though the sun isn't out, plenty of light can sneak into the bedroom from outside, disrupting your child’s sleep patterns. 
  • Use an air purifier or humidifier to keep air quality at its best. Allergens and excessively dry air can interrupt a child’s sleep and make waking up unpleasant, too. Also, many machines create a white noise that drowns out other distracting sounds, which is often very appealing to children on the autism spectrum.
  • One mother suggests the following: "We also used either a sound machine (played nature sounds) or a CD with relaxing instrumental music to help our son get to sleep or stay asleep. That seemed to help reduce waking up from other people moving around after he went to bed." 




As a side note, many parents report that Melatonin (a hormone secreted by the pineal gland which has been shown to regulate sleep patterns) has been highly beneficial in helping their child with sleep difficulties.  For kids on the autism spectrum, the patterns of melatonin secretion may be irregular, so it is not that they don't produce it, but that they don't produce it at the right times of day. 

By

Medical Treatment for the Symptoms of High-Functioning Autism

“What medications are used to treat the symptoms of high functioning autism? Which ones have the best track record? And, what are the side effects of these medications?”

There are several medications used to treat the symptoms associated with High-Functioning Autism (HFA) and Asperger’s (AS). Medications may be considered for problematic behaviors in these children and teens, for example:
  • aggression
  • anxiety
  • compulsions
  • depression
  • destructive behavior, or other disruptive behaviors
  • hyperactivity
  • inattention
  • irritability
  • mood lability
  • obsessions
  • perseveration
  • repetitive behaviors
  • self-injurious behavior
  • sleep disturbance
  • stereotypic movements



After medical causes and environmental factors have been ruled out, a trial of medication may be considered if the behavioral symptoms cause significant impairment in functioning and are responsive to behavioral interventions. In some cases, the diagnosis of a comorbid disorder (e.g., major depression, bipolar disorder, anxiety disorder, etc.) can be made reasonably, and the child can be treated with medications.

Modifications of diagnostic criteria may be necessary to account for clinical presentations of psychiatric conditions in children with developmental disabilities, and certain tools (e.g., behavior checklists, structured interviews) may be helpful. In other cases, therapists opt to target specific problematic behaviors or symptom-clusters in the absence of a clear comorbid psychiatric diagnosis.

Approximately 45% of kids and teens (and up to 75% of grown-ups) with HFA and AS are treated with psychotropic medication. Older age, lower adaptive skills and social competence, and higher levels of problematic behavior are associated with the likelihood of medication use.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

SSRIs—

Selective serotonin-reuptake inhibitors (SSRIs), antipsychotic agents, stimulants, and α-adrenergic agonist antihypertensive agents are the most commonly prescribed classes of medications for kids on the autism spectrum. Double-blind, placebo-controlled studies have demonstrated the effectiveness of the SSRIs fluoxetine and fluvoxamine in the treatment of repetitive and other problematic behaviors in young people with HFA and AS. Studies of these and other SSRIs have shown improvements in target symptoms, for example:
  • aggression
  • anxiety
  • aspects of social interaction and language
  • depressive symptoms
  • difficulty with transitions
  • irritability
  • meltdowns
  • repetitive behaviors
  • shutdowns
  • tantrums

Potential side-effects of SSRIs include – but are not limited to – the following: 
  • abdominal discomfort
  • agitation
  • apathy
  • behavioral activation
  • constipation
  • dizziness
  • drowsiness
  • dry mouth
  • fatigue
  • headache
  • hypomania or mania
  • nausea
  • sexual dysfunction
  • sleep difficulties
  • suicidal ideation

Risperidone—

Risperidone has become the first medication for the symptomatic treatment of irritability, aggressive behavior, deliberate self-injury, and tantrums in kids and teens with HFA and AS. Controlled studies have confirmed the short-term effectiveness of risperidone for these disruptive behaviors.

Potential side-effects include – but are not limited to – the following:
  • excessive appetite
  • constipation
  • dry mouth
  • dyslipidemia
  • extrapyramidal symptoms
  • hematologic abnormalities
  • hyperprolactinemia
  • insulin resistance
  • neuroleptic malignant syndrome
  • QTc prolongation
  • sedation
  • seizures
  • tardive dyskinesia
  • urinary retention
  • weight gain

Methylphenidate—

Recent studies of methylphenidate have demonstrated improvement in hyperactivity, impulsivity, and inattention in kids with HFA and AS. Methylphenidate is effective in some of these young people, but the response rate is lower than that in kids with ADHD, adverse effects are more frequent, and it is unclear whether the results can be generalized to other stimulants.

Potential side-effects of stimulant medications include – but are not limited to – the following:
  • abdominal discomfort
  • appetite reduction
  • delayed sleep onset
  • exacerbation of tics
  • increased anxiety
  • increased blood pressure
  • increased heart rate
  • inhibition of growth
  • irritability
  • jitteriness
  • repetitive behaviors

 ==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

Clonidine—

Studies have documented modest benefits of clonidine in reducing hyperarousal symptoms (e.g., hyperactivity, irritability, outbursts, impulsivity, and repetitive behaviors) in young people on the autism spectrum.

Potential side-effects include – but are not limited to – the following:
  • constipation
  • decreased blood pressure
  • dizziness
  • drowsiness
  • dry mouth
  • irritability
  • sedation

Atomoxetine—

Studies have suggested that atomoxetine may be effective for ADHD–like symptoms in kids and teens on the spectrum. Appetite suppression, dizziness, fatigue, liver injury, mood swings, nausea, and suicidal ideation are among the potential side-effects of atomoxetine.

Melatonin—

Studies suggest that sleep disorders affect 50 to 70 million individuals in the U.S. Sleep disorders exist whenever a lower quality of sleep results in impaired functioning or extreme lethargy. Difficulties initiating and maintaining sleep are very common in young people on the spectrum, affecting about 15-25% of this population.

A large study revealed several of melatonin’s sleep-enhancing benefits. Reviewing 15 studies of sleep in healthy individuals, researchers noted that melatonin significantly reduced sleep latency (i.e., the amount of time needed to fall asleep), while boosting sleep efficiency (i.e., the percentage of time in bed spent asleep) and increasing total sleep duration. Studies demonstrate an important characteristic of melatonin: the hormone exerts its hypnotic (i.e., sleep-inducing) and sedative (i.e., anxiety-relieving) effects, regardless of dosage time.

Produced by the pineal gland, melatonin is a noteworthy hormone that works both as a sleep aid and a potent antioxidant/immune booster. Also, melatonin is a natural sleeping pill that shifts the body clock into the desired direction. When taken between 3:00 and 6:00 PM, melatonin tricks the body into thinking that dusk comes sooner. Thus, AS and HFA kids become sleepy earlier, helping them fall asleep at 10:00 or 11:00 PM, rather than tossing and turning all night.

Potential side-effects include – but are not limited to – the following:
  • abdominal discomfort
  • confusion
  • daytime sleepiness 
  • dizziness 
  • headaches
  • irritability
  • mild anxiety
  • short-lasting feelings of depression

In addition, melatonin supplements can interact with other medications, including:  
  • birth control pills
  • blood-thinning medications (i.e., anticoagulants) 
  • diabetes medications
  • medications that suppress the immune system (i.e., immunosuppressants)



It will be important for future research to address the need for more rigorous evaluation of safety and effectiveness of medication for kids and teens on the spectrum. When medications are used, baseline data regarding behaviors and somatic complaints should be collected, informed consent should be obtained, potential benefits and side-effects should be explained, and potential strategies for dealing with treatment failure or partial response should be reviewed. Also, it is important to have some quantifiable means of assessing the effectiveness of the medication and to obtain input from a variety of sources (e.g., moms and dads, educators, therapists, etc).

Consistent use of validated, treatment-sensitive rating scales and medication side-effect scales is necessary. A wide variety of outcome measures have been used in research studies and in clinical practice to measure problematic behavior treatment effects (e.g., Nisonger Child Behavior Rating Form, Clinical Global Impression Scale, and Aberrant Behavior Checklist).

Click here for references…


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

 ==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

 ==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

 ==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book
==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism
By

Great Resources for the Management of Young People on the Autism Spectrum



Below is a list of resources for professionals who work with children and adolescents on the autism spectrum:

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3.    Aman MG, Novotny S, Samango-Sprouse C, et al. Outcome measures for clinical drug trials in autism. CNS Spectr.2004;9 :36– 47
4.    Aman MG. Management of hyperactivity and other acting-out problems in autism spectrum disorder. Semin Pediatr Neurol.2004;11 :225– 228
5.    American Academy of Pediatrics, Committee on Children With Disabilities. Auditory integration training and facilitated communication for autism. Pediatrics.1998;102 :431– 433
6.    American Academy of Pediatrics, Committee on Children With Disabilities. Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability [published correction appears in Pediatrics. 2001;108:507].Pediatrics.2001;107 :598– 601
7.    American Academy of Pediatrics, Medical Home Initiatives for Children With Special Needs Project Advisory Committee. The medical home.Pediatrics.2004;113(5 suppl) :1545– 1547
8.    American Academy of Pediatrics. Understanding Autism Spectrum Disorders [pamphlet]. Elk Grove Village, IL: American Academy of Pediatrics; 2005
9.    American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSM-IV-TR). Washington, DC: American Psychiatric Publishing; 2000
10.    American Speech-Language-Hearing Association, Ad Hoc Committee on Autism Spectrum Disorders. Principles for speech-language pathologists in diagnosis, assessment, and treatment of autism spectrum disorders across the life span. Available at:www.asha.org/NR/rdonlyres/D0370FEA-98EF-48EE-A9B6-952913FB131B/0/v3TR_autismLSpan.pdf. Accessed February 22,2007
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