Navigating Elementary School
Special Education and the Law
When considering educating your child with autism in the public school system, it is important to have a basic understanding of the laws that govern special education. Bear in mind that just having the diagnosis of autism does not automatically qualify your child for special education. Your child must be found eligible through an educational evaluation to access the additional supports and services provided in special education.
The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) is a federal law that ensures services to children with disabilities. IDEA governs how states and public agencies provide early intervention, special education, and related services to eligible infants, toddlers, children, and youth with disabilities.
It contains four parts:
- Part A creates a foundation for the remaining parts of the law by covering general provisions and definitions.
- Part B includes provisions for a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE) for children with disabilities from ages 3-21.
- Part C includes provisions for providing Early Intervention Services for infants and toddlers up to age 3 and their families.
- Part D includes provisions for support for state personnel development, technical assistance and dissemination, technology, and Parent Training and Information Centers (like the Utah Parent Center).
Six Principles Covered in IDEA 2004
- Free appropriate public education (FAPE) available to eligible children with disabilities aged 3 to 22 at no cost to the parents.
- Appropriate evaluation to determine eligibility or continued eligibility, the student’s strengths, and educational needs.
- Individualized Education Program (IEP) that outlines the special education program, services, and related services based on the child’s educational needs.
- Least restrictive environment (LRE) designed to meet a student’s special education needs while being educated with nondisabled peers to the maximum extent appropriate.
- Parent and student participation in decision-making regarding their child’s education.
- Procedural due process protects the rights of the parents and their children with disabilities and gives families and schools a mechanism for resolving disputes.
Special education means specially designed instruction at no cost to parents or the adult student, to meet the unique needs of the child with a disability including:
- Instruction in the classroom, home, hospital or institution, and in other settings;
- Instruction in physical education.
Specially designed instruction means adapting the content, methodology, or delivery of grade-level core instruction as appropriate to the needs of an eligible student, to:
- Address the unique needs of the student that result from the student’s disability
- Ensure the student’s access to the grade-level curriculum, so that he/she can meet the educational standards within the jurisdiction of the Local Education Agency (LEA) that applies to all students
- Provide access to the alternate core standards for qualifying students based on IEP team decisions
When a child is found eligible for special education services, they will be listed under one of 13 categories of disability. The IEP evaluation team can work together to determine the area that best describes your child.
The Utah Parent Center has many resources to support parents in educating their children including webinars and videos, in-person training sessions, a handbook, and information sheets. Here are a few suggestions to get started:
Section 504 is part of the Rehabilitation Act of 1973 that applies to individuals with disabilities. It helps protect the civil rights of persons with disabilities. Section 504 requires that no person with a disability be excluded from or denied benefits of any program receiving federal financial assistance, which includes public education. A student is eligible for accommodations under Section 504 if the student has a disability that substantially limits one or more of a student’s major life activities that impact education. More information about Section 504 can be found here.
If a student is eligible for special education services, they are also protected under Section 504. It is possible for a student to not qualify for special education and only receive 504 services and supports. It depends on the impact their disability has on any accommodations and modifications needed to access the curriculum. These documents, here or here, show comparisons between an IEP and a Section 504 plan.
Accommodations and Modifications
Many students, with or without disabilities, need classroom adaptations, accommodations, and/or modifications to be successful in school. Adaptations, accommodations, and modifications need to be individualized for students, based upon their needs and strengths, and are often written into an IEP or Section 504 plan. To learn more about accommodations and modifications, and to see examples of each, click here.
One of the first questions at the top of most IEP forms asks whether Assistive Technology (AT) was considered in the development of the IEP. This question cannot reasonably be answered until the IEP team has discussed all needs and goals so that AT can be considered when needed to help reach those goals.
Assistive Technology (AT) is any kind of technology that can be used to enhance the functional independence of a person with a disability. Assistive Technology (AT) devices are tools to help to overcome challenges. It can be anything from a simple (low-tech) device such as a schedule board, to a complex (high-tech) device, such as a computerized communication system. It can be big — an automated van lift for a wheelchair — or small — a grip attached to a pen by Velcro to help with gripping.
The Utah State Board of Education (USBE) has developed a consideration guide to help IEP teams to think about the need for AT when developing an IEP. Remember that education is not just academics but should include opportunities for social and emotional learning, areas in which students with ASD often need more support. Consider how AT might help a student with social and/or self-awareness, self-management, relationship skills, and responsible decision-making. More information can be found on the Utah Parent Center website.
The Utah Parent Center has many resources to support parents in educating their children including webinars and videos, in-person training sessions, a handbook, and information sheets. Here are a few suggestions to get started:
“[Be prepared] to see if they are getting the services they need to be successful in the school setting. Know your rights as parents under IDEA, and have accountability from school personnel. Look at what services you can get your child to get in school and what outside services you may need.”
“Be your child’s best advocate. You are part of the IEP team and really have a voice in this team. Do not be afraid of advocating for extra services even if it means using the [dispute resolution process].”
“Plan with the school and be involved in the development and implementation of an effective IEP. This may take more than a one-time meeting with a team at each school.”
All IEP teams, which include parents and the student or adult student, have to decide the setting where the student’s IEP will be carried out. There are various considerations when making that choice, including the services and supports needed, as well as the Least Restrictive Environment (LRE). LRE means a student with a disability is educated with students without disabilities as much as possible. A child should not be removed from general education based solely on modifications needed.
Placement is determined annually based on the intensity and amount of services required to meet a student’s needs, as written on their IEP. If possible, students with IEPs should be educated in the same environment as non-disabled peers, as close to home as possible, and considering possible harmful effects.
A change in location is not always a change in placement. Placement is not a place, but a program of educational services offered to a student who qualifies for Special Education. Location is the physical location where the child receives special education or related services, such as a classroom. If the student is moving from one location to another, and the level of services and the access to nondisabled peers remains the same, this is not considered a change in placement.
School Types and Options
A good education is vital to all children and youth, including those with autism spectrum disorder (ASD). Finding the right school or educational setting can be a challenge for parents. There are many things to keep in mind when making this choice, such as the child’s needs, abilities, and unique personality. Possible choices include the following:
- Public schools
- Charter schools, including online charter schools (these are public schools)
- Utah’s statewide online education
- Private schools
- Dual enrollment
For more information on this topic, see School Types and Options.
“My daughter flapped her arms when she was excited. In the public school, I addressed that this was how she showed excitement and thought we were done. We got into [a charter school for ASD students] in 2nd grade and after her first day, I asked how it was. She told me that nobody cared when she flapped her arms. I cried.”
“We absolutely love our team at [the] elementary. But we take each year one year at a time to make sure that it’s the best possible scenario for our child. So while it’s working wonderfully right now we evaluate that every year and throughout the year. We commute 30 minutes each way so he can have this great experience.”
“[Select] the best educational setting for your child. Remember there is more to education than just grades. We ultimately began homeschooling after first grade. It was a better fit, and I could control and create social opportunities.”
Do you worry that your child might be the target of bullying or that perhaps your child might bully someone else? If the answer is yes, you are not alone! And you have good reason to be concerned. The reality is that children with disabilities are significantly more likely to be bullied. In our survey of 90 respondents, 15 specifically mentioned bullying as something to watch out for.
There are many possible definitions of bullying but the bottom line is:
If the behavior hurts or harms someone, either emotionally or physically, and if they have a hard time defending themselves, it’s bullying.
Bullying behavior can be broken down into five categories.
For more information about each type of bullying, including examples, click here.
Action Steps for Parent and Child
The Utah Parent Center has several resources available under the topic of bullying that explain steps parents and students can take when there is suspected bullying. These include:
- Steps to Take if Your Child is being Bullied
- Template for Reporting Bullying
- Student Action Plan Against Bullying
- Help Your Child Recognize the Signs of Bullying
- Record Keeping and Bullying
- The Individualized Education Plan (IEP) and Bullying
If your child is the bully, remember bullying is a behavior, not a characteristic. Bullies are sometimes suffering just as much as the victim and need to be dealt with using compassion and concern. Bullies need to be taught what they should do instead of bullying. This resource from the Utah Parent Center has some suggestions to help your child stop this behavior.
“If at all possible, look for a charter school with smaller class sizes and make sure that the school is adamant about dealing with bullying.”
“Watch for bullying from the staff at school. [Watch for] increased covert bullying as peers get better at antagonizing children with social deficits.”
“Be aware of all the bullying that comes up and listen to them. Be a role model for them and help them to understand others in a way they can. Let them have some in-style clothes to fit in. And pick out their clothing to their comfort.”
Home and Community
Self-determination is a combination of attitudes and abilities that lead people to set goals for themselves and to take the initiative to reach these goals. It is about being in charge but is not necessarily the same thing as self-sufficiency or independence. It means making your own choices, learning to effectively solve problems, and taking control and responsibility for your life. Practicing self-determination also means experiencing the consequences of making choices.
The development of self-determination skills is a process that begins in childhood and continues throughout your child’s life. Since self-determination skills are most effectively learned and developed by practicing them, your child with autism should be given ample opportunity to use their self-advocacy, decision-making, and socialization skills beginning in elementary school and continuing through high school to prepare them for working and living in their community.
Parents can provide support for their children with autism by giving them a growing number of opportunities to make their own choice and decisions as is age-appropriate. Help them to solve problems, set goals, and take responsibility for themselves. Parents should not wait until their children are teenagers to provide opportunities to explore employment, postsecondary education, housing options, and community recreation programs.
“Begin good health habits, practice social [interactions], [develop] good habits with any life skills.”
“Positive thinking is imperative. Setting attainable goals and encouraging small steps toward them is a great starting point.”
“Help your child learn to love learning and try to help [them] build service and connection with others socially. Start thinking about self-advocacy. [It’s] never too early.”
Have High Expectations
When parents and others have high expectations for children with ASD, it leads to the best outcomes. Youth with disabilities who have more expected of them are more likely to live fully integrated lives and have a greater opportunity to strive toward their hopes and dreams. And isn’t that what you want for your child? It is important to have high expectations and to communicate them clearly to your child. Set positive expectations and allow your child to explore possibilities.
It is never too early to help your child learn to make choices and decisions, which fosters self-determination and will lead to greater independence. Help them learn and use “soft skills,” the skills we use as we interact with others in school, in the community, or in employment. They include skills such as grooming and self-care, social skills, appropriate behavior, dependability, and so on. They are helpful no matter what your child will do as an adult, and will help them with their present interactions. Work on them at home. Give your child chores and responsibilities so they can practice these skills and have success in a safe environment. Some benefits of chores and additional resources can be found here. Model, discuss and teach soft skills, and allow your child to experience doing a job well.
Encourage the professionals who work with your child to do the same. Teachers, aides, therapists, etc. can model, teach, support, and practice with your child. Keep in mind that kids whose parents and other trusted adults have high expectations for them may have more educational opportunities and better-paying jobs that match their abilities and interests. See them as capable of great things because they are. Listen to them and guide them towards success. More information about high expectations in school can be found here. More about fostering independence and self-determination at home can be found here. Some suggestions for teaching independence can be found here.
”Treat a man as he is and he will remain as he is. Treat a man as he can and should be and he will become as he can and should be.Stephen R. Covey
“[Get] good habits started in all areas.”
“[Get] support from school special education; accept that [your] child is different from [their] peers; create opportunities for social connections.”
“Expectations should be tailored to current abilities and [be] unique to each child.”
Nurturing the Needs of Siblings
The impact of autism in a family varies considerably but there are some commonalities that many siblings experience.
There are positive aspects, such as siblings learning to accept other people as they are and understanding that everyone has differences. They may be a protector or a supporter of their sibling with autism, cheering on any new skills or development. Siblings tend to be more responsible than their peers because they often take on duties at a younger age than most in caring for their brother or sister, whether assigned by parents or self-imposed.
A parent shared this story about how her young daughter learned to cope with negative comments made by her older autistic brother, showing adaptability.
“I’m just trying to figure out how best to handle my son’s negative behaviors. One example is with negative comments. He always has to make them. I can’t get him to stop. His ADHD specialist said that a lot of negative behaviors can be ignored. I’ve been ignoring some less important negative comments he’s been making today and yesterday. His younger sister has a good coping skill. For example, if [he] calls her weird, she may say, “I know I am. Thank you”.
There are also some negative aspects of being a sibling to someone with autism. The sibling may feel resentful, jealous, or neglected when their parents spend so much time, energy, and resources on the child with autism. They may be embarrassed to be in the community with their brother or sister because of behaviors that attract unwanted attention. Some may not want to have friends come to the house so they don’t have to explain autism to them. And the added responsibility mentioned previously as a positive aspect can also be negative as it robs the sibling of a “normal” childhood experience. Some siblings feel a need to overachieve to make up for the things their brother or sister may not be able to do.
Many siblings go back and forth between positive and negative feelings and emotions. This is normal. Help the sibling to understand it is ok to have both positive and negative feelings about their brother or sister and not to feel guilty about it. Open communication is essential. Clearly explain to siblings what is going on and answer questions they may have. Speaking in terms of strengths and weaknesses is often helpful and can be done in age-appropriate ways. Listen to concerns the other children may have, and reassure them that you love them. Share your personal feelings with them, and be honest.
Other things you can do to help siblings manage their emotions and cope with the situation include:
- Give them room to be kids! A balance is needed so siblings have “their own life” and have time to be with friends and do the things they are interested in. They need to have their own space that is theirs alone, whether a room, a locked drawer, or space in a closet.
- Arrange to spend time alone with each of your children. This is important for all families, but especially for those in which a child has autism. It guarantees time, even if it’s only briefly each day, that your children don’t have to compete with each other for your attention.
- Give Information. Explain autism to your children, answer their questions honestly, and allow them to do their own learning about how it affects their sibling. Talk to your children about the perceived unfairness of the autistic child getting more time and attention. This lets your children know that you recognize and respect their needs.
- Involve Them. Plan quality time with each of your children, do something special just for them, and give them specific responsibilities or tasks to help them feel involved in the care of their sibling. But assure them that as the parent, YOU are the one responsible for their brother or sister, not them.
- Connect Them with Siblings from Other Families. If possible, try to introduce your children to others who have a sibling with autism or other special needs. They may find that other children share their feelings. Organize or find a sibling group in your community where your other children will have an opportunity to talk with others.
It may be the case that some families could benefit from counseling or therapy related to their family’s situation. Siblings have needs as individuals, and their coping mechanisms vary. When needed, do not shy away from accessing these supports.
Aggressive Behavior and Autism
Aggressive behavior, defined as behavior aimed at harming or injuring another person or oneself, is more common in people with ASD than in their typically-developing peers. Studies have shown that aggressive behavior is displayed by most toddlers and preschoolers. Some with autism, however, don’t seem to “outgrow” the behavior the way their peers do and more girls with autism engage in aggressive behavior than girls in the general population.
Aggressive behavior may not seem like a big problem when the child is young and small. It is easy to move them to a safe space and protect yourself and others from their punches, kicks, or other aggression. When they begin to grow, however, it can be a challenge. The impact of aggressive behavior on families includes not only physical harm but stress, anxiety, isolation, and reduced social support. Self-injurious behavior is especially hard on parents who want to keep their child safe and protected but can’t keep them from harming themselves.
Families can also experience increased financial burden due to injuries, property damage, as well as needing to pay for professional services and therapies. The impact on the child can include less engagement in learning as they may be removed from the classroom for outbursts, fewer positive social experiences due to stressed peer interactions, less participation in the community for fear of outbursts or triggers, and a higher likelihood of using medication to control behavior.
Many children with autism will learn strategies to lessen their use of aggressive behavior as they get older. Some may not. Some factors that are part of or co-occurring with autism that lead to increased instances of aggressive behavior include:
- Self-injurious behaviors
- Repetitive behaviors
- Sensory issues – overstimulation can trigger aggression
- Sleep problems
- Gastrointestinal problems
You may feel like you are the only family dealing with a child who, for example, trashes the house with an outburst or comes at you with fists flailing when you tell them no. You aren’t. Seek help for your child AND you/your family. It can be helpful to determine the reason for the aggression. It could be a tool to communicate, or a way to get something they want or out of doing something they don’t want to do. It could be due to a physical or medical reason. It can be due to a decreased ability to cope with emotions and frustrations. Some treatments can help to reduce aggressive behaviors and even support the person with autism in building their skillset. These include behavioral interventions, parent training, cognitive behavioral therapy, and medication. Part of any treatment for aggression should include screening for all other possible explanations. This handout can help you understand more about autism interventions.
Webinar: Understanding Aggression in Autism from SPARK, an autism research organization.
“My son needs 24-hour care and supervision. He can't carry on a conversation. He needs help with meals, meds, bathing, picking out what to wear, going to appointments. He doesn't do well with change in routine or any other kind of change. He is super sensitive to sound. He is aggressive towards me and my husband when he gets upset or frustrated. Sometimes he is aggressive for reasons we can't figure out. He is also very funny, smart and we love him beyond words. People say we should have him start staying at his group home full time. It's very hard to think about. I'm crying even just writing this. The group home and staff have been great. They try very hard to work with us. How do I give my son to college students that constantly move on to other opportunities, [and] that are not autism trained?”
“Some [kids] start getting aggressive, are easily frustrated, [have] meltdowns, [and are easily] overstimulated. [Be prepared for] temper tantrums and meltdowns over routine changes or sensory experiences such as bright lights, scratchy clothing, loud noises, or many noises at once.”
“[Watch for ] disruptive behavior in the classroom as well as heightened frustration with noise and assignments. A noisy classroom may lead to more severe behavior as well as keep the youth from learning concepts.”
Autism and Safety
Safety in the Home and Community
As a general rule, parents do what they can to make their homes a safe environment for their children. As children grow, they begin to be more aware of dangers. Children with ASD, however, may not. There are many behaviors or just natural curiosity an ASD child has that can increase the risk of danger and harm to themselves, others, or property. It is the responsibility of caregivers to create a safe environment as well as to teach their children to be safe. Click here for a list of suggestions for safety in your home and community. Interacting with Law Enforcement
Throughout their lifetime, people with autism are likely to have encounters with law enforcement. In one study, it was found that autistic people are seven times more likely to have 911 interactions with both law enforcement and first responders than the general population. It could be because they wandered off and law enforcement is searching for them, or because they have aggressive behavior in a public place that causes concern from bystanders. It is possible you as a parent may need their assistance to help with an outburst or aggressive behavior at home. Whatever the reason for the interaction, it is always better to prepare your child for the possibility it may happen than hope that it doesn’t.
While training for law enforcement is improving when it comes to helping those with autism, be aware that the officer dispatched to help your child may not understand it. Contact your local 911 call center and law enforcement to let them know about your child. To have a positive first encounter with law enforcement, invite your community police to meet your family or go to a nearby station to take a tour or meet your local highway patrol. If your kids are familiar with first responders and uniforms and know how to respond or see them in a positive situation, it will lessen the stress if there is a crisis.
Some police departments have registries that you will want to get on. And some have specially trained law enforcement personnel that can be requested to come to your home in emergencies. Information can be given to a 911 dispatcher, such as to arrive without lights and sirens, to talk in quiet tones, not make sudden movements, to talk about Disney movies, or whatever will help your child feel less threatened and more comfortable. Be prepared to explain what will best help your child.
More tips for interacting with law enforcement can be found on Safety in the Home and Community. Some additional ideas include carrying disclosure tools for your child to identify themselves as autistic, such as a handout card. Train your child to obtain permission from law enforcement before reaching for the card by verbally letting them know they have an information card about themselves. If your child is non-verbal, consider using a medical alert bracelet or another type of identifier. Practice disclosing with your child and have them role-play with people you trust.
We've talked to our local police department about [our son], where he works, what his behaviors are like, where we live, etc. They told me I can register my phone number with them so that if they ever receive a call from my number, [our son's] information will come up and they can be prepared for a possible interaction with a child (well... now a grown man) with a disability.
We have a little file that we keep with a current photo of [our son] and a card with information about some of the important things law enforcement should know about how he communicates, etc. We have practiced with our son over and over again about what he should do if he encounters a law enforcement professional. We have a family member who is in law enforcement but other law enforcement officers may be willing, if asked, to practice with your person so that they can be familiar with the uniforms, etc.
When police intervention was necessary, we would inform the dispatcher that we were calling for someone with an autism diagnosis. We had a script where we would ask for the police to arrive with no sirens and lights off once in front of our home. My son loves police cars, and we were always afraid that his behaviors would be increased by the lights and sirens. Once inside, I would immediately communicate with the officers to speak calmly and reassure [our son] that he was safe in a quiet tone to help de-escalate the situation.
Benefits of Recreational Opportunities
Recreational activities and experiences produce feelings of enjoyment and satisfaction and allow us to express creativity, access our community, and achieve and master new skills. For those with autism, participation in recreation and leisure activities allows them to learn specific skills related to a particular sport or activity as well as more general skills that can be applied in a variety of settings. Recreational activities can help your child in many areas of their life.
The benefits that recreational activities and experiences can provide your child with autism outweigh the effort it takes to find and set up the activities. These benefits include:
- Promoting inclusion and quality of life – recreational activities expand the boundaries of a community for your child, giving them connections outside of their home and school.
- Increasing self-esteem and confidence – participating in something new and mastering new skills adds to self-esteem. Physical activity is known to improve self-esteem and general well-being in everyone, including those with ASD, and improves mental health as well.
- Providing opportunities to make choices – with so many options available, your child can make choices about what they want to participate in, to find things that interest them.
- Providing opportunities to practice communication – organized activities can help your child build and practice appropriate communication skills with their peers in a natural environment.
- Learning and practicing skills – recreational activities can teach or improve motor skills, structured play skills, social roles skills, specific skills related to the activity, and additional skills of teamwork, sportsmanship, and more.
- Reducing reliance on parents – some programs may provide one-on-one support for your child, or there are enough natural supports that parents can sit back and watch, and enjoy seeing their child learn something new or make a new friend.
The Utah Parent Center has a list of possible recreational activities based on what county is offering them. They also compile a Summer Resource List of activities and camps that are suitable for children with disabilities including ASD. These lists are a good starting point but check out opportunities in your local community that the children from school or your faith group attend. There may be something that will work well for your child and has the added benefit of including other children they may already know.
Many children with autism have restricted or unusual interests. That can make it difficult to engage them in other activities. It might be helpful to find some way to incorporate your child’s interests into another activity, keeping in mind how the interest might develop into a job someday. For example, a child who loves building with Legos may enjoy a club where Legos are the main activity. Or a child who enjoys taking things apart and putting them back together could enjoy learning about creating electrical circuits or building robots in a continuing education program. Rather than trying to extinguish the unusual interest, try to shape it into something that will benefit your child.
Working with Professionals and Systems
Finding the Balance
Many of the parents we surveyed mentioned finding balance in your life – balance between therapy and downtime, balance between focusing on the autistic child’s needs and the needs of siblings, and balance between your job and taking your child to appointments. A wise person once said, “Autism is a marathon, not a sprint. Pace yourself for the long haul.” This advice is very helpful, especially if parents are concerned about all of the skills their child needs to learn and the time and practice it takes to learn those skills. You may feel that you need to fill every free minute with therapy and skills training; otherwise, your child may not have a quality life as an adult. Your child also needs a quality life as a child, and you need one as a parent. You can determine what that looks like for you, your child, and your family and not feel like you have to justify your choices to others.
One place to start is with a person-centered plan, a plan that is focused on the dreams and desires of your child with autism.
- What is their vision for a good life?
- What does that look like for your family?
- What does that look like for you?
- What does that look like for your ASD child?
Seeing the desired result can help you choose what to prioritize in your life now. Depending on their age, you may need to help them think about the options that are available to them to choose from.
Here are some suggestions from experienced parents to help you create balance in your life.
Some additional advice includes:
- Learn to let go – of expectations, the need to control the situation, the need for perfection, and the idea that you are the only one who can do something.
- Find respite care and get away once in a while.
- Vent to a listening ear when you get frustrated.
- Find outlets for yourself outside of being a caretaker.
- Use scheduling and calendars and purposely schedule your time. Be ok with the fact that not everything will fit in the schedule right now.
- Don’t let autism rule your life. It is just a part of a rich, full life.
”Do something for yourself. As a parent, you dedicate so much to your children and their well-being. When you add a disability to parenting, efforts are amplified as you navigate insurance, therapy, medical challenges, etc. It is easy to lose yourself in your parenting efforts and especially the efforts you make for this child with a disability. Self-care for you as the caretaker and also self-care of the relationship between you and your partner is key.
”A teacher told me that the best therapy I could provide for my daughter was to have her be involved in our family and do what we were doing. This worked well when she was little and a little more manageable, but we’ve tried to keep it going as much as possible. Sometimes it’s just not successful for her to do some of the activities/outings we want to do as a family, and we arrange for her to do something else so we can focus on the rest of our family. That way we all have a great time!
”We make a point to take our other children on individual dates or outings so they have our undivided attention. Our son with autism is quite demanding and when we're out as a family, his needs and the need to "keep the peace" would often trump some of the desires of our other children. Individual activities not only gave them our undivided attention but the option to choose activities, food, and locations that might not be an option if our son with autism were along for the ride.
- 11 Ways to Balance Work and Parenting a Child with Autism
- Balancing All Aspects of Life with an Autistic Child
- Some parenting advice taken from: “Autism Marathon Training: A Panel” UVU Autism Conference, 2021
Autism and Mental Health
Many with autism also have at least one co-occurring mental health condition. Depending on the study, the numbers range from 70% to 85% of autistic children who have one or more additional mental health diagnoses. Symptoms, however, may go unrecognized or are lumped in as part of the child’s autism. For those who also have an intellectual disability, the lack of recognition of mental health conditions is even higher because many have difficulty recognizing and communicating their symptoms. This can make it more difficult to determine whether behaviors are related to ASD or mental health concerns. It is important to correctly diagnose and treat mental health conditions as part of any treatment program for autism.
Some common co-occurring mental health conditions include, but are not limited to:
- Attention Deficit Hyperactivity Disorder (ADHD)
- Bipolar Disorder
In seeking treatment, find a professional who understands that autism and mental health disorders are separate diagnoses. Both will need to be considered when determining an appropriate treatment plan. Some medications, such as aripiprazole and risperidone, have been approved for the treatment of mood disorders in autistic children. Cognitive Based Therapy (CBT) has also been proven helpful. Those with an intellectual disability along with a mental health diagnosis, referred to as Dual Diagnosis, may need additional help in determining supports and treatment methods. You can learn more information about Dual Diagnosis here.
- Awareness, Education, and Counseling: Supporting mental health for adults with autism – Autism Outcomes
- Autism Statistics and Facts
- AUTISM AND HEALTH: A SPECIAL REPORT BY AUTISM SPEAKS
- Autism’s Clinical Companions: Frequent Comorbidities with ASD
- Dual Diagnosis: People with Autism and Dealing with Mental Health Challenges.
- Autism Spectrum and Mental Illness: Misdiagnosis or Co-Occurring Condition? – The Asperger / Autism Network
Autism, Picky Eaters, and GI Problems
Entering the Education System
According to many studies, children with autism have more gastrointestinal (GI) problems than other kids their age. The most common complaints are constipation, diarrhea, acid reflux, or heartburn. Your child may have one or more of these issues. You will want to work with your child’s healthcare provider to address these problems. Also, be aware that you should watch for changes in behavior such as frequent tantrums or acting out. Sometimes, children with autism cannot identify or report that they have abdominal pain so their behavior becomes the way they communicate that they are constipated.
Another common problem is picky eaters. Almost all children go through phases of picky eating but many children with ASD have restrictive behaviors around food that impacts what or how much of something they will eat. And it can include not just the food, but the brand of food, like only eating a certain fast food company’s french fries. Feeding issues can range from mild to severe, in some cases leading to weight loss and malnutrition. Foods not only have a variety of flavors, but textures and temperatures as well. A child with ASD may have compulsive behaviors, motor problems, or sensory challenges that impact what they will eat, with some children preferring only crunchy foods and others only wanting white foods, for example. It can be very frustrating as a parent because you want your child to have a balanced diet but their picky eating can interfere with it. And it can also lead to or trigger GI problems.
Parents can be creative in finding ways to make a food item more appealing. Sometimes involving the child in the preparation process or in choosing a new food to try at the grocery store is helpful. Or setting rules about trying at least one bite of something at each meal. Providing reinforcement or rewards for trying new foods can also be helpful but once the child is regularly doing so, scale back the rewards. Many feeding issues can benefit from outpatient therapy with an occupational, behavioral, or speech-language professional. They each use different approaches to help expand the type and variety of foods your child will eat. Choose the method that you feel most comfortable with for your child.
Building a Team
Entering the Education System
Now that your child is in the school system, you will want to continue to build a team of support around your child. This team includes you as parents, your child, school personnel, and any other professionals who collaborate and work together toward attaining a common goal for your child: achieving meaningful progress.
Providing appropriate services and supports to your child to meet their unique needs is a process. This process has been designed to include different players: professionals at school, professionals outside of school, parents, young students (when appropriate), and adult students. In school, some students with autism require special education services, some need a Section 504 plan, and others can progress with the natural supports found in the classroom. Always lend a listening ear and thoughtfully consider the information and options shared by the members of the team. You are equal partners in the education and support of your child. The team’s focus should always be on the needs of the child.
At any meeting with your child’s teachers or other professionals, each person should assume the good faith of the other and the joint commitment to meeting the needs of your child. Teamwork helps to strengthen relationships and to set a positive foundation for future relationships. When everyone is working together to develop an Individualized Educational Program, Section 504 plan, or other treatment or person-centered plan for a child, exciting things can happen. All of the contributors to the plan can then stand together in their support of the decisions made. One parent shared their experience:
I’ve gotten very involved with my son’s school. It has helped me to build perspective on what his experience is like and what the teacher’s experience is like. Teachers can get frustrated easily, but most are caring people who sincerely want to help your child. Most teachers are not given the training to help them work with kids with disabilities, and differentiating curriculum is not natural for most teachers. Even special education teachers may have a learning curve when it comes to your child, and regular ed teachers especially will struggle, even with the best of intentions. Behavior especially will probably stump them and may lead to frustration. Openly communicate with your child’s education team. Be open to suggestions they make and let them know how you are feeling about those suggestions. Bring ideas to the table yourself and listen to what feedback they give you. Be professional. Try not to get frustrated. Expect them to be professionals and hold them to the expectation that they should problem-solve situations actively.
Ongoing communication will be important on your journey to adulthood with your child. Being open and clear with the professionals that work with your child will help bring solutions to each unique situation. This becomes more apparent through time as your child grows and changes. Challenges will present themselves at various moments, so establishing good communication channels with those who work to support them will prove to be beneficial. In addition to traditional face-to-face communication, today’s technology makes it easier to keep in touch with each other via phone calls, text, email, or other online software. Be judicious in your use of these tools and remember to expect and keep a positive and respectful tone. Always begin by assuming the best intentions from everyone involved. Working together, your child can find success in life.
“[Expect] lots of adjustment and accommodating your child. They need help learning to regulate emotions and sensory input. Lots and lots of advocacy with professionals and family who don't understand.”
“Get as much help and feedback as you can. Keep an open and honest feedback with educators, counselors, and doctors.”
“I made it very clear about my son's diagnosis upfront because he's so high functioning, it does take some time to understand his behaviors are connected to the spectrum. Being upfront saves a lot of time from new educators not understanding why my son does the things he does and the extra help he needs with socialization and appropriate behavior.”
Social Peer Interactions
Peer interactions are an essential part of growing up and occur naturally in school and other environments. While many assume students with autism are not interested in friends, the truth is that most are; they just may not know how to initiate or maintain friendships. Studies have shown that it is a lack of skill, not a lack of desire that often prevents those with ASD from developing and sustaining positive peer relationships. Among young children, children with friends tend to use more forms of nonverbal communication and are engaged with peers at higher rates. Early joint attention, where both children are interested in the same thing and recognize the other child’s interest, is also linked to higher-quality friendships later in childhood. Supporting children with ASD to initiate friendships, give joint attention, and engage in socializing over long periods can help them to build social connections with peers. Finding shared interests between your child and their peers, such as beloved activities and topics, will help motivate the desire to connect socially even more. These skills will improve your child’s school and community experience as well as their future, assisting them in the workplace, and throughout their lives.
Some of the symptoms of autism that can affect a child’s social skills include:
- Problems with speech development
- Delayed development
- Delays in processing what is being said
- Inability to carry on a reciprocal conversation
- Repeating words and phrases without meaningful communication (echolalia)
- Not answering or giving unrelated answers to questions
- Difficulty reading non-verbal cues, especially the more subtle or nuanced ones
- Failure to understand the feelings of others or see things from another person’s perspective
- A tendency to think concretely so jokes, sarcasm, teasing, figurative speech, or abstract communication is not understood
Knowing these possible deficits allows you and the professionals who support your child to strengthen these areas through focused practice. For example, a teacher can coach those who interact with your child to pause after asking questions to allow your child time to process and respond. Or a speech therapist can practice reciprocal conversations with your child. Working as a team, and including classmates and peers in the process, can help your child have meaningful peer interactions.
There are interventions focused specifically on peer interactions (see Peer Therapy, Approaches to Autism Treatment). There are also things parents, teachers, and other professionals can do to help the autistic child learn to play and talk to others, manage their emotions, and solve problems. Mastering these basic social skills can lead to increased peer interaction and acceptance, increased participation in the community or afterschool activities, and higher engagement of the child with their classmates. For some ideas on how or what to teach, see Social Skill Intervention Strategies for Children with Autism, https://www.autismparentingmagazine.com/autism-social-skills/, or ask your support team for help.
- Peer Relationships Among Children With ASD: Interventions Targeting Social Acceptance, Friendships, and Peer Networks
- Social Skill Intervention Strategies for Children with Autism
- Autism Social Skills: How to Enhance Social Interaction
- The Importance of Community-Based Instruction for Individuals with Autism Across the Lifespan
“My son has always had to "mask" certain behaviors or personality quirks in order to please friends at school. When we joined a social skills group over the summer, he instantly connected with a girl one year younger than him. They got along famously and enjoyed their own jokes and fun. On the way home from a group session, my son announced from the backseat that his favorite thing about his new friend was that he could completely be himself with her, and didn't have to worry about what she thought of him. I was moved to tears. We all need friends like that in our lives!”
“We often met with a counselor, usually my son alone or me alone. He gave me ideas of things to try and helped me understand why my son did things and how to help him change. For example - role-playing to be empathetic & understand that his actions could hurt others as much as others hurt him.”
“My son was able to have friends in the lower grades. But things got harder as he got older. The divide between him and his peers grew wider. I lost many friends as well. His/her peers may notice something is wrong even if adults don't. Kindness and empathy may not come naturally to peers, but they can be taught.”