Autism Spectrum Disorder: Information and Resources for Families

A Brief Overview

  • A short YouTube video by Osmosis.org provides an overview of Autism Spectrum Disorder (ASD).
  • A medical diagnosis of autism is not required for school-based evaluations or interventions. Read on for more information.
  • Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.
  • To encourage early screening for ASD, the Centers for Disease Control and Prevention (CDC) provides a 2-page tracking chart of developmental markers for children Birth-4.
  • The University of Washington Autism Center provides a collection of resources in categories that include online tools, early recognition, service organizations, and neurodiversity.
  • Information about early screening recommendations and state-specific guidance is available from the Washington Department of Health (DOH).
  • Help navigating medical systems is available from PAVE’s Family to Family Health Information Center. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

Full Article

Parents of children with autism have many different experiences when watching for their baby’s first smile, their toddler’s first steps, emerging language, or their child’s learning in playtime or academic areas. When developmental milestones aren’t met in typical timeframes, families may seek a diagnosis, medical interventions, and/or supports from school.

April is Autism Acceptance Month, providing an opportunity to consider challenges and celebrations for individuals who experience neurodiversity, which is a word used to capture a range of differences in the ways that humans function and experience the world.

Self-advocates in the Autistic community celebrate diversity

Much of the Autistic community rallies to honor neurodiversity, uplift the voices of self-advocates, and forward the movement of civil and social rights. “Nothing About Us Without Us” is part of the disability rights movement supported by The Autistic Self Advocacy Network (ASAN), which shares resources by autistic individuals with lived experience for people who have autism spectrum disorders. ASAN created an e-book, And Straight on Till Morning: Essays on Autism Acceptance, as part of Autism Acceptance Month 2013. The agency also provides a welcome kit for newly diagnosed individuals: Welcome to the Autistic Community!

What is Autism Spectrum Disorder (ASD)?

Autism is referred to as a “spectrum” disorder, which means that signs and symptoms vary among individuals. The Centers for Disease Control and Prevention (CDC) defines Autism Spectrum Disorder (ASD) as “a developmental disability that can cause significant social, communication and behavioral challenges.

“There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”

A diagnosis of ASD includes several conditions that were formerly diagnosed separately. Examples include autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. A short YouTube video by Osmosis.org provides an overview of ASD.

Signs and Symptoms

People with ASD may have problems with social, emotional, and communication skills. They might repeat certain behaviors or have rigid ideas about routines. Signs of ASD begin during early childhood and typically last throughout life. The CDC recommends that families seek early intervention if there are concerns about how a child plays, learns, speaks, acts, and moves.

Here are a few examples of some ASD symptoms:

  • Not pointing at objects, such as an airplane flying overhead, or looking when someone else points
  • Avoiding eye contact
  • Trouble understanding or expressing feelings
  • Not wanting to be held or cuddled
  • Repeating or echoing words, phrases, or actions
  • Not playing “pretend”
  • Unusual reactions to the way things smell, taste, look, feel, or sound

Diagnosing ASD can be difficult since there is no specific medical test. Doctors look at the person’s behavior and development to make a diagnosis. The CDC says a diagnosis from a credible professional by age 2 is considered very reliable.

How to seek a diagnosis

Medical diagnoses in Washington are provided by Autism Centers of Excellence (COEs). Many of these centers provide access to Applied Behavioral Analysis (ABA) therapy, an intervention that is helpful for some individuals with ASD.

An Autism COE may be a health care provider, medical practice, psychology practice, or multidisciplinary assessment team that has completed a certification training authorized by the state’s Health Care Authority (HCA). Physicians, nurse practitioners, and pediatric primary care naturopaths are eligible to apply for COE training and endorsement. The Developmental Disabilities Administration (DDA) accepts diagnoses from COEs as a component of DDA services eligibility, with the exception of naturopathic providers.

The American Academy of Pediatrics recommends that all children have a developmental screening at every well-child check-up, with an autism screening at 18 months of age and again between ages 2 and 3. To encourage early screening and intervention, the CDC provides a two-page tracking chart of developmental markers for children Birth-4.  Further information about these recommendations is available from the Washington Department of Health (DOH).

CDC numbers show that 1 in 88 children have ASD. According to Washington’s DOH, about 10,000 of the state’s children have ASD. An Autism Task Force has been at work since 2005 to promote early screening and intervention. In collaboration with DOH and other agencies, the task force in July 2016 published the downloadable Autism Guidebook for Washington State.

The guidebook includes information for families, care providers, educators, medical professionals, and others. It includes an extensive Autism Lifespan Resource Directory. Diagnostic criteria and special education eligibility criteria are described, as are specifically recommended interventions.

Getting help at school

Autism is an eligibility category for a student to receive school-based services through an Individualized Education Program (IEP). The categories are defined by the federal Individuals with Disabilities Education Act (IDEA). State law further defines the categories and criteria for intervention.

The Washington Administrative Code that describes IEP eligibility (WAC 392-172A-01035) describes autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a student’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.”

Regardless of whether a student is medically diagnosed with ASD, a school district has the affirmative duty to seek out, evaluate and serve—if eligible—any child within its boundaries who has a known or suspected disability condition that may significantly impact access to learning (Child Find Mandate). Child Find applies to IDEA’s Part B IEP services for children ages 3-21 and to IDEA’s Part C early intervention services for children Birth-3.

Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.

Schools have specific evaluation tools to determine how the features of an autistic disorder might impact school. Evaluations can also determine eligibility based on health impairments (for example, ADHD), speech delays, learning disabilities, or emotional behavioral conditions that might co-occur with autism. See PAVE’s article about evaluation process for more information, including a list of all IDEA eligibility categories.

In short, a student is eligible for an Individualized Education Program (IEP) if the evaluation determines:

  1. The student has a disability
  2. The disability significantly impacts access to education
  3. The student requires Specially Designed Instruction (SDI) and/or Related Services

Not every student with ASD is eligible for school-based services through an IEP. Some may have “major life activity” impacts to qualify for a Section 504 Plan, which can accommodate a student within general education.

Section 504 provides anti-discrimination protections as part of the Rehabilitation Act of 1973. Keep in mind that students with IEPs have disability-related protections from IDEA and Section 504. Additional protections are part of the Americans with Disabilities Act (ADA). See PAVE’s article about disability history for additional information.

Resources related to ASD

Resources for families, teachers, and medical providers supporting individuals with autism are vast. The University of Washington Autism Center provides a manageable place to begin with a small collection of resource categories that include online tools, early recognition, organization, and neurodiversity. Within its online tools, UW maintains lists of organizations that provide advocacy, assessments, intervention services, and research/training.

Families whose children experience autism may need services beyond school. Speech, Occupational Therapy, Applied Behavioral Analysis (ABA) therapies, and other services may be available through insurance if they are determined to be medically necessary.

PAVE’s Family-to-Family Health Information Center (Family Voices of WA) provides support to families navigating various healthcare systems related to disability. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

The state Health Care Authority provides information about ABA resources and how to seek approval from public insurance (Apple Health) for specific therapies. HCA also hosts a list of Contracted ABA providers in Washington State

Another place to seek help with questions related to medical and/or insurance services is the Washington Autism Alliance (WAA). WAA provides free support for families navigating insurance and medical systems and can help with DDA applications. WAA’s website requests families to join the agency by providing basic information before they navigate to request an intake. Note that while basic services are free from WAA, the agency may charge a fee based on a sliding scale if families request legal services from an attorney.

WAA is sponsoring a virtual Day Out for Autism April 24, 2021, with family-friendly Facebook Live events starting at 10 am.

Depression and the Autism Spectrum

It is a common misconception that people who have Asperger’s or Autism do not get depression.

In fact this is more common than you think!

Suicidal thoughts are ten times more likely in people with Asperger’s or in the Autism Spectrum.  Survey data was used on 256 men and 118 women who were diagnosed:

66% reported suicidal thoughts

35% reported plans or attempts at suicide

31% reported depression

Depression can be caused by:

Social troubles because you do not seem to fit in

Guilt or regret over past actions/outbursts/meltdowns

Overwhelming feelings and thoughts

Anxiety and Panic Attacks

Miscommunications / Misunderstandings

Fatigue or Tiredness due either to the condition or to medications taken for the condition (e.g.: Ritalin)

Here are some comments people with Asperger’s have made:
(Comments have been made anonymously)

“I have been diagnosed with Asperger’s syndrome and depression.
My repeated obsessive thoughts turn into that sadness and also when someone gets frustrated with me like my parents. I don’t even know how I feel sometimes. When I can’t learn from my mistakes as fast as everyone else. I feel hopeless because it’s how I’m made to make mistakes over and over without ending.”

“I understand. Repeating the same mistake over and over…I would always forget to leave my coat in my locker at school (because of some rule) and 4 days out of 5 I would forget it. Consistently. And my repetitive obsessive thoughts also turn into sadness, but for me this occurs irrespectively of being yelled at.”

“I have Asperger’s and am high functioning to a degree. I also suffer from depression and anxiety which a lot stems to the fact my circle of friends has drastically dropped since my teenage years, I’m nearly 23 and I don’t go out like most people my age do. Mainly because I socially isolate myself. I find situations arise when I go out, for example…a club I used to go to has very loud bands on Friday nights, I can’t hear my thoughts it screws with my head. It depresses me because when I was younger I had loads of friends, now I’m a social outcast who feels nothing but bitterness and anger towards a lot of society. Al lot of my friends don’t want nothing to do with me anymore. Best friends have come and gone and now I feel alone. I live alone which doesn’t help and rely on Xbox live to chat to people. I just wish sometimes I wouldn’t come out with weird stuff. It freaks me out as well as it does to other people.”

The first step to helping, is by recognizing the signs:

A suicide attempt is rarely made all of a sudden.  It is most common for individuals to shift between the stages on a continuum which range from thinking about suicide to committing suicide.

The stages can go back and forth and are not limited to:

Planning – for example, giving away possessions that were thought of as special to them.

Organizing means – a fascination with a certain weapon that they were not interested in before, for example.

Suicide attempt

Some may start in self harming behavior which can lead to death while the goal is not to actually die.  This is because these individuals may not have actually thought of the consequences and finality of suicide.

Pay attention to:

Statements like “I would be better if I just died”

Threatening to commit suicide

If they are more withdrawn or depressed: not participating in their routine activities, they avoid communicating even more than usual.

Recognizing the signs is even harder when some people with Autism or Asperger’s cannot communicate the conventional way.

Here is how you can help someone who is depressed

People who consider suicide mostly need to know that others do care:

Even if you don’t talk, just being there helps

Let them know that most people think about suicide at one time or another, and thinking about suicide does not mean that things can’t get better.

Listen to what they are saying about themselves and their life

Avoid saying things like “you should be grateful to be alive!” or “You will be fine”

Tell them that you will always be willing to talk and there are others who care

Inspire them to make new friends or contact old friends or even call the Suicide Prevention Lifeline. https://www.suicidepreventionlifeline.org/– 1-800-273-8255.  The Lifeline offers online chat, which is a good option when individuals are non-verbal or when social anxiety is high.

If you see that there is an imminent danger of the individual to commit suicide:

If it is an emergency, call 911

Contact outside help or make sure they contact their Doctor

Monitor their temperament and establish a follow up plan when there are changes – the plan can include calling the Doctor, making sure they call the National Suicide Prevention Lifeline – https://www.suicidepreventionlifeline.org/ or call 1-800-273-8255.

Make sure to remove any means that can facilitate suicide – prescription drugs, weapons, etc.

Most of all let them know that there are always people who are ready to help them.  It is important for them to know that it’s ok to ask for help and let either family members, friends or professionals how they feel.

References:

Synapse, Reconnecting Lives, Fact Sheets:  Depression, Suicide Risk and Autism
Retrieved from – http://www.autism-help.org/family-suicide-depression-autism.htm
Collingwood, J. Suicidal Thoughts 10 Times More Likely in Adults with Asperger’s.
Retrieved from http://psychcentral.com/news/2014/10/13/suicidal-thoughts-10-times-more-likely-in-
adults-with-aspergers/76016.html
Cassidy, S. et al. Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome
Attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 25 June 2014 doi:
10.1016/S2215-0366(14)70248-2
Raja, M. Suicide risk in adults with Asperger’s syndrome. The Lancet Psychiatry, 25 June 2014
Doi:10.1016/S2215-0366(14)70257-3

 

Positive Behavior Supports: Continuing the model at home and in the community

By: Dr. Vanessa Tucker, PhD., BCBA-D

What is Positive Behavior Support?

Positive Behavior Support (PBS) is a special education initiative that informs school districts, schools and classrooms regarding prevention and intervention practices designed to teach and reinforce pro-social behaviors. Behavior supports, as we parents well know, do not end at the schoolhouse door. Interfering behaviors can and do continue to manifest themselves in other settings and present a real and present challenge to parents and caregivers raising children with special needs.

The field of PBS is built on the premise of universal interventions that are designed to teach behaviors that prevent negative or challenging ones from occurring. These universal interventions, or Tier I, are effective for most children, but approximately 15 to 20% will need something much more intense in order to experience success. These children require what are known as Tier II and Tier III Interventions. Tier II interventions are designed to address the 15% who need more focused interventions. These may be temporary or may be needed on an ongoing basis. A small number of children (approximately 5%) will require intensive interventions, or Tier III, designed to support the most challenging behaviors. As a parent, you may find that problematic behaviors are a top priority for you due to your child’s unique needs. Parents can benefit from applying the same basic system of PBS in the home and community in order to mitigate the presence of interfering behaviors as well as teaching and reinforcing acceptable replacements. The focus of this brief article will be on prevention tactics that parents and caregivers can implement in the home and community.

Prevention as Intervention

Challenging or interfering behaviors occur for a wide variety of reasons. In many cases a communication breakdown is the “culprit.” In other words, children who have communication delays often resort to behaviors we don’t want in order to let us know what they do want! Children may also engage in challenging behavior due to stress, fatigue, unmet needs for attention, or because they have learned a habit that “works” for them. For example, the child may engage in mild to moderate aggression toward a parent when they first arrive at home as a means of accessing attention. This is problematic as the child inevitably is reinforced for these behaviors when the parent provides the designed attention. The first order of business in PBS is to teach and reinforce behaviors and/or to change our own practices as a means of prevention. In addition, it is strongly recommended that you work with your school team and utilize the Functional Behavior Assessment (FBA) and Positive Behavior Intervention Plan (PBIP) to guide your interventions at home. Pay close attention to the described “function” or reason(s) why your child engages in challenging behaviors. You’ll want to plan your interventions based upon those hypothesized functions. For example, if your child’s aggression is due to escape from unwanted tasks, you’ll want to find ways to help him escape (e.g. ask for a break) successfully. Remember that whatever you select as an intervention should be acceptable to you and your family.

In order to be efficient, you will want to analyze the various times, areas and places where challenging behaviors are most likely to occur. Create a simple matrix of your activities and rate your child’s behaviors as (a) non-problematic, (b) somewhat problematic, or (c) very problematic. Target those areas that are “very problematic” first. Decide what could be creating or maintaining the problematic behavior. Is your child in need of communication supports? Does he understand what is expected of him? Does she need more visuals in order to do what you want? Is her need for attention being met in ways that are unacceptable? Are there sibling issues? Tackling the most difficult areas first will bolster your ability to dive into the smaller issues later and may actually address them inadvertently through your interventions with the bigger ones.

The following table (Table 1.0) presents a list of general recommendations and justifications for prevention of challenging behaviors at home or in the community.

Table 1.0 Tactics for Prevention of Challenging Behaviors

TacticRationaleExample
Non-Contingent Reinforcement/Planned AttentionYour child may need your attention and will engage in whatever behavior necessary to obtain it. You want your child to obtain your attention without having to engage in mild to moderate behaviors to receive it.When you come home spend the first 10 or so minutes with your child before you check email, answer the phone or do anything else. Plan this and stick with it. Give your child (or children) your undivided attention before you do anything else.
Schedules-Visuals and/or WrittenYour child may need the same structural supports that they use in the school setting in order to predict what is coming, what is done, and what is expected of them. They may not be able to predict these things as successfully if given with verbal prompts only.Create and use schedules with visuals or words for family routines. This might include an activity schedule for evening activities, for a bathing routine or a trip to the store. Rely on your school staff for support in this area. They can assist you to build and use these systems.
Transition Schedules and ObjectsYour child may need more information than you require in order to successfully understand and navigate transitions. You may need to provide him with more information about what is coming and what will happen. Challenging behaviors may result from a breakdown in understanding what is coming or what is expected.Create a transition schedule such as a white board with icons and/or line drawings. Some children benefit from a basic checklist that they can “check off” as they go. Others need a transition object (e.g. a teddy bear, or something else that is comforting) in order to successfully navigate transitions.
Demand-free time after schoolAll children are tired to some degree or another after school. For some children, the social demands of school have left them with very little in the “tank” at the end of the day. Behaviors may occur because the child needs rest from social and other demands.Consider providing 30 minutes or more of demand-free time (e.g. no homework) after school. Pair this with a timer and allow the child to engage in something that is soothing, restful and relaxing. Don’t pair this with their favorite and most reinforcing activity-save that for after they complete what you want later in the evening, especially if that involves homework or chores. Engage them in a schedule with demands (homework and chores, etc.) after a period of rest.
Homework and ChoresA child may balk at the idea of homework and/or chores, which are regular expectations of most parents after school. You may find that children engage in a lot of challenging behavior around these two areas.Consider the rest time after school as the first line of defense. Then, consider using a visual system that breaks down what they have to do, how long they have to do it, and when they are finished. Break things into smaller pieces (called “chunking”) and consider pairing with breaks in between each piece. Show visuals of what you expect the finished product to be. For example, what does a clean bathroom look like? Show each part in a picture format.
Token SystemYour child may not be particularly motivated to engage in things that are outside of his/her interest area. Challenging behaviors may occur despite your efforts to provide visual structure and break things into smaller pieces. She may need a more tangible way to motivate her to comply with what you want.Consider adding in a token system designed to provide reinforcement for desired behaviors. If possible, mirror the ones used at school if they are effective in motivating the child to comply. Creating a “First, then” procedure allows the child to see that after they do what you want, they will get something that they want. For example, “first clean bathroom, then 20 minutes of iPad” is a reasonable expectation. Provide tokens (stickers on a chart, poker chips on a velcro board) for each step of the bathroom clean up. Make sure you follow through with the earned reinforcer once they’ve complied.

Summary

Challenging behaviors in the home and community are never easy for parents or caregivers to address. Working with your school team, you can come up with ways to support your child so that they understand what you want and have the tools to engage in replacement behaviors that are acceptable to everyone. Many children with disabilities benefit from the same basic principles of PBS that are used in schools. A focus on prevention can decrease stress, increase compliance and teach replacements that lead to better behavior in all settings.

We’re Glad You Asked! A Question About IEP

Question One:

My son’s Individualized Education Plan (IEP) is due the beginning of this school year.  I always go into this meeting feeling as if I have to sign and agree before I leave. Sometimes the School District will mark “DRAFT” on the front page of the IEP but nothing seems to change even though I have asked for additions and made suggestions.  The team always says they will add the changes later but that never seems to happen.  I want to be considered a team member, but I am beginning to feel ignored.  What can I do?

Answer One:

DRAFT IEPs are not required by law. However, it is encouraged in order to give parents an opportunity to review any recommendations the team may have. I suggest that you request in writing a DRAFT version of the IEP prior to the meeting.  This will give you time to review the content, make notes, and be prepared. It is not permissible to have a final IEP presented to you at the meeting.  If the team is unwilling to include your suggestion you certainly have options.  Since this is not your child’s first IEP you don’t have to sign it.  I encourage you to continue to work with your team.  It may take several meetings but it is well worth the time and effort.  I wish you good luck.

Question Two:

I am the parent of a 10 year old on the Autism Spectrum.  Last year my son was not allowed to go on the 4th grade field trip because I could not go with him. Other parents were not required to go.  His IEP stated that he was able to participate in field trips and other extracurricular activities.  I really want to make sure this does not happen again. He was devastated. What can I do?

Answer Two:

I am sorry he was not able to go.  I agree that you need to address this before missing other opportunities.  I would plan ahead and ask his new teacher if there will be any field trips or other activities for the coming school year where extra support may be needed.  Make sure the teacher has a copy of his IEP, and underline the section concerning extracurricular activities. Explain that if he needs to have someone accompany him, the school will have to provide that assistance so he is able to participate.  I would also put it in writing to the principal and special education director.  If you need to ask for an IEP meeting to address this issue, make sure you do so.