100-Day Autism Parenting Toolkit

My child was just diagnosed with autism, now what?

Having your child diagnosed with autism can be a difficult and confusing time for families, however you are not alone in this journey. Thousands of families face this news every day. In the United States alone, 1 of every 54 children is diagnosed with autism. This kit will help your family get the information they need about what autism is, guide you through your first few months as an autism parent or guardian. When it comes to diagnosing autism, there is no single medical or psychological test made specifically for autism - instead, diagnosis is based on a combined evaluation of multiple professionals ranging from psychologists, physicians, and pediatricians. As a parent, you've taken the first step in helping your child. Working with the professionals that diagnosed your child will help in guiding you on what specific areas need immediate attention.

What is autism?

Many people, when using the term “autism”, may be referring to what the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) calls Autism Spectrum Disorder. Autism Spectrum Disorder (ASD) is a range of disorders that cause a variety of symptoms, with some individuals showing mild symptoms to others having much more severe symptoms. Autism Spectrum Disorder is a developmental disorder that causes issues with communication, social, verbal, and motor skills. The most important thing to know about autism is that it is a spectrum disorder, meaning its affects vary from person to person. No two people with autism have the same symptoms. Symptoms appear in the early stage of childhood, generally before the age of three. Symptoms can vary from mild to severe. Oftentimes, autism can be accompanied with other difficulties such as intellectual disabilities, motor and coordination issues, and physical health problems, such as sleep disorders or gastrointestinal issues, and attention deficit hyperactivity disorder (ADHD). There are no found causes of autism. Similarly, there is no cure for autism. There is, however, a plethora of different therapeutic approaches one may take to help improving the lives of individuals impacted by autism.

How do I chose a treatment?

Research suggests that early intensive behavioral intervention, based on applied behavioral analysis, is effective at improving language, function and behavior in individuals with autism. Interventions focused on parent training and cognitive behavioral therapy can improve social skills, communication, language use and management of challenging behaviors.

Is autism common?

According to a report from the Center for Disease Control (CDC), in the United States 1 in 44 children have autism, with boys being four times more likely than girls to be diagnosed with autism. According to the World Health Organization (WHO), there is a median prevalence that 1 in 160 children have autism worldwide. Unfortunately, there is no concrete explanation as to why there has been such an exponential increase, however, theorists suggest an overall increase in awareness and interest in researching developmental disorders has affected such statistics.

Possible Symptoms

The severity of autism varies case by case, and a person affected by autism has the ability to live what many would consider an "ordinary life". How your child functions now may be very different from how he or she will function later in life. Studies have proven that early intervention is the key to making positive development and growth a possibility. Individuals with autism often view the world and experience things differently than a neuro-typical individual. Attempting to understand that world as much as possible will impact your relationship with your child immensely. The most important thing to remember is that autism presents itself differently and in a unique way with each and every individual. No two individuals with autism are the same. You have already noticed some symptoms, which is why you sought out a diagnosis. Here's a few ways autism can present itself to keep an eye out for other areas of development in which your child may be impacted.

Social Development
In early childhood, children with autism may show social developmental impairments ranging from responding less to stimuli, avoiding to look directly at or smile at others, or being less responsive to their name being called or mentioned. Some individuals with autism might tend to engage in less eye contact and lack the ability to use simple gestures to express themselves. Additionally, some children - ranging from three to five years old - may show lack of social understanding, non-verbal communication, or response to emotions. Early intervention and therapeutic recreational programs play an important role in improving development of social skills.

Communication
Typically, by the age of three years old children begin engaging in simple conversations with other people. It is common by the first birthday that toddlers have started babbling and responding when being called by their name. However, some individuals with autism have delays in beginning to babble or speaking and using nonverbal communication to express themselves. Please note again that every individual is different depending on the degree or severity of his or her autism. With the help of speech-language therapy, many individuals can develop a range of language skills. Non-verbal individuals have the ability to learn to communicate by using pictures, sign language, or even a tablet to assist them with communication. Moreover, some children with autism might also have difficulty understanding body language, tone of voice, and expressions. Depending on the severity of their symptoms, children with autism might also exhibit body language that does no match what they are saying or feeling.

Repetitive Behavior
Common repetitive behaviors vary from arranging and rearranging objects, repeating words or sounds, to jumping up and down, or behaviors that are self-stimulating. Additionally, instead of playing with toys, children may present the tendency to arrange toys in a specific way. It can be distressing to the child to disrupt a certain order he or she has established. Children with autism thrive off of consistency and a routine in their environment; any slight change might be extremely stressful.

Other symptoms that often accompany autism
Not all symptoms of autism are perceived as negative. Exceptional math skills, computer skills, artistic abilities, ability to decode written language, capacity to completely focus on a task, and complete honesty, are just some of the additional qualities that your child may exhibit. Some children with autism also might display additional physical and medical issues such as gastrointestinal problems, epileptic seizures, pica, and sensory integration dysfunction.

Gastrointestinal Problems
Many studies have found that children with autism are more likely to suffer from gastrointestinal (GI) complaints than they would from children without autism. Gastrointestinal problems include: Gastritis, Irritable Bowel Syndrome, Constipation, and Food Allergies or sensitivity. Fortunately, biomedical interventions assist children with autism in finding a nutrition plan that might help the individual cope better with gastrointestinal issues.

Epileptic Seizures
It is estimated that 15% to 30% of people with autism also suffer from epileptic seizures. Epileptic seizures are abnormal excessive neuronal activity in the brain. Epileptic seizures provoke uncontrolled jerked movements, stiffening of muscles, facial twitching and unexplained confusion. Seizures that are associated with autism tend to start in early childhood or during adolescence. Epilepsy treatment for people with autism would be the same as treating epilepsy for any person. Physicians prescribe a drug made to treat epileptic seizures.

Pica
Pica, fairly common in children with autism, is an eating disorder that involves craving and chewing substances that have no nutritional value, such as ice, clay, soil, or paper.

What comes after the diagnosis?

There is no doubt that early intervention is your child’s best hope for the future. Early intensive behavioral and therapeutic interventions improve learning, communication and social skills. There are numerous therapeutic interventions offered for autistic children depending on their needs, which tend to be very intensive, usually several hours per week, involving the child’s entire family and team of doctors. Therapy sessions might be conducted in your home, in specialized centers, or in classrooms. It’s important to take into account that there is no one best therapeutic intervention or style, therapies for different children work in different ways. Fortunately, there are numerous therapies your child might benefit from. Below is a list of common therapies offered:

Occupational Therapy (OT)
Occupational therapy is a client-centered service that enables people with autism to engage in occupations and daily tasks. It focuses on promoting participation in activities or occupations that are meaningful to them, activities that may support the well-being, health and development of the individual [7]. OT helps children and adults participate in activities they want and need to do, including skills such as: movement in arms, legs, dexterity of small muscles (such as hand and fingers), improving hand-eye coordination, or improving handwriting skills. Occupational Therapy thrives on activities to enhance and encourage the child’s skill development guided by the child’s interest.

Speech and Language Therapy
Often people mistake language and speech as the same term, but each has a different meaning. An individual who has trouble with speech struggles with the coordination of the muscles and movements necessary to produce speech. One who has trouble with language struggles with understanding what he or she says, or what he or she hears by having problems organizing words in a meaningful way. Speech and Language therapists are highly trained professionals who evaluate and treat children and adults who have difficulty with speech or language and also offer support for families and provide information for the general public [9].

Social Skills Therapy
The purpose of social skills therapy is to teach people who may or may not have emotional problems about the verbal and nonverbal behaviors involved in social interactions. “Small talk” in social settings does not come easily for people who need social skills therapy. In social therapy, they will learn the importance of good eye contact and how to read subtle social cues such as how to tell when someone wants to change the topic of conversation. The goal of the Social Skills Group Therapy Program is to assist children in developing friendship skills by teaching strategies for: active listening, conversational skills, responding appropriately to social cues, or identifying personal feelings and understanding the emotions of others.

Play Therapy/Floortime
Play therapy encourages play between the autistic child and his or her parents, with the intention of teaching the parent to utilize their child’s level of interest and motivation to get involved in social interactions with him or her [10], allowing the child to take the lead in his or her current needs and interest. Play Therapy creates a pressure-free environment where the emphasis between the parent and child is their relationship, exposing their children to ‘real time’ play in order to soothe them and enjoy social experiences.

Pivotal Response Treatment (PRT)
PRT is an intervention model that targets the individual’s pivotal areas such as motivation, response to cues or stimuli, and social interactions. The PRT mainly focuses on motivation, self- initiated activities, rewarding skills and attempts, and the use of reinforcement. Psychologists can provide special education teachers, PRT, and other providers trained in PRT.

Relationship Developmental Intervention (RDI)
RDI is an intervention program that targets individuals with autism to develop emotional relationships by exposing them to it in a gradual and systematic way. It seeks to correct the deficits in areas such as motivation and social interaction, improving the child’s quality of life by fostering their social skills and self-awareness.

Sensory Integration Therapy
An important part of Sensory Integration Therapy is understanding the profound responses and influence different types of sensory input have on a child’s behavior and learning, then modifying the sensory environment. An environment can make ordinary situations feel overwhelming, interfering with daily function and even isolating individuals and their families. Sensory Integration Therapy emphasizes the relationship between sensory experiences with motor and behavior performance, focusing directly on the neurological processing of sensory information. Sensory Integration Therapy is commonly used in conjunction with Occupational Therapy.

Biomedical Interventions
As mentioned previously, some children with autism may suffer from gastrointestinal issues, or might not be getting the nutrition they need, due to the fact that some children in the autism spectrum can be picky eaters. Biomedical interventions are designed to help stop or at least reduce the effects of gastrointestinal problems and nutritional deficiencies your child might be experiencing [10]. Aiding your child with a diet and nutrition plan along with your pediatrician, they have the opportunity to have better sleep and cognitive abilities, along with a lower probability of having rashes and pain due to gastrointestinal issues. Discussing some dietary guidelines with your child’s physician can also be beneficial for your child. As another biomedical intervention, in the 1960’s the Defeat Autism Now (DAN!) Protocol was founded. DAN! Protocol starts with the idea that autism is a series of biomedical disorders such as lowered immune responses, external toxins from vaccines, and other problems caused by some foods during prenatal exposure through the mothers diet, medications, or antibiotics. DAN! practitioners believe that by eliminating substances that triggered autism, individuals can regain neurological health through special diets, supplements, and other remedies such as removal of toxic metals from the body. Along with DAN! protocol, parents use other interventions such as ABA and Occupational Therapy. However, this approach proves to be much more expensive due to visits of specific practitioners, purchasing of special foods, nutritional supplements and other materials. Most costs are not covered by insurance.

Recreational Therapy
Physical activities can be an effective treatment for autism; it can help reduce hyperactivity and aggression, while aiding in the development of social interactions. These activities can be conducted at an individual or group basis, where the child can interact with other children.

Tips for Parents

The first thing that comes to mind when a child is diagnosed with autism is either complete confusion or manic over finding the necessary resources such as doctors, therapists, schools, camps, and recreational programs. However, one thing that maybe isn’t taken into consideration immediately is the effect autism may have with family members, friends, neighbors, and other communities. Do not hesitate to ask for help. It can be very difficult at first, but the most important thing to remember is that you are not alone in this process. Talk to someone who has experience with children on the spectrum, or consider joining a support group, which allows you to listen and talk to people who are going through a similar experience. Families will go through difficult times during the upbringing of a child with autism. Therefore, it is important to remember there are multiple services that provide help to your child. The American Autism Association offers an Autism Help Hotline where you can contact us with any doubts, questions, or concerns regarding resources that your child might need. Email us at info@myautism.org, or call at 877-654-GIVE (4483).

To help you deal with any stress or uncertainty you might experience, we have formed a list of tips that can guide you and your family after the recent diagnosis of your autistic child:

• Learn about autism, the more you know about autism, the better equipped you’ll be to make informed decisions for your autistic child.

• Become an expert on your child, take note on what triggers bad behaviors and what causes positive ones.

• Accept your child. Do not focus on how your child is different, embrace and enjoy your kid’s special quirks!

• Don’t give up; don’t jump to conclusions about what life is going to be like for your child. Focus on what they can do instead of making comparisons to typical development in a child.

• Be consistent and set up a schedule. Autistic children tend to do best when they have a consistent and structured schedule.

• Reward good behavior. Positive and negative reinforcement can go a long way for an autistic child. Praise them when they act correctly or learn a new skill (positive), or reward them by taking away a task they may not like (negative). Rewarding them with a sticker or letting them play with their favorite toy can go a long way.

• Create a home safety zone. Create a private space for your child where they can relax, play, and feel secure.

• It is very important, make time for fun. Your child on the spectrum is still a child. There needs to be more to their life than therapy, find ways to play and have fun together.

• Get involved in the community. Know that there are more families going through raising a child with autism. Make friends with other parents who have children with autism and share your child’s struggles and accomplishments. Meeting other parents will give you an additional support system.
  

Letting Family & Friends Know

An autism diagnosis affects every member of your family in different ways. Parents now place most of their energy focusing on helping their child with autism, which may cause stress at work, in your marriage, in your finances, and in other personal relationships. With it comes informing family members and closest friends about your child’s diagnosis. Jennifer Newton Reents, a Registered Nurse with a bachelor’s degree in journalism, wrote an article titled Telling the Family: This is Autism [8]. Below is a list of the quick tips she provides on how to explain an autism diagnosis to your relatives:

• Give information about autism on a need-to-know basis: try not to go into detail the first time you explain that your child has been diagnosed with autism, it may cause confusion or panic with an overload of information. Just start with explaining that things may seem a little different with your child.

• Offer friends and relatives a short list of Internet resources: encourage family members to read about autism, but warn them that the literature can sometimes be overwhelming – and to not be alarmed by every new theory.

• Encourage family members to discuss their fears, disappointment, confusion and concerns: as equally as you might have felt when you knew your child’s diagnosis, his grandparents, uncles, or aunts might feel the same way. Not only will they feel concerned about your child, but also about you.

• Don’t be offended: let family members know that your child might avoid eye contact, physical interaction such as hugs, and might say anything that is on his or her mind. Remind them not to be offended and understand their differences.

  Remind everyone the importance of accepting your child: Kids with autism need more space and patience, don’t insist on hugs or physical contact, and don’t tease him or her. Interact with them at their pace.

• Provide guidance in purchasing gifts, toys, or planning outings: Gently remind family and friends of your child's specific sensory issues, phobias, or environmental triggers to avoid unpleasant scenes or meltdowns while in their care.

• Teach relatives the necessary skills to assist your child or care for your child in your absence: Even if the care would be needed on an emergency basis, require family members to maintain and stick to schedules, special diets, and routines. Also leave a list of service providers who can be contacted if the family caregiver has concerns or questions regarding your child's behaviors or actions while you're unavailable.

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Grant & Scholarship Options

Having a child or family member with autism can be overwhelming not only emotionally, but financially as well. The American Autism Association website offers a list of various scholarships including: school scholarships, recreational scholarships, service dog scholarships, iPad scholarships, sibling scholarships, and more. Additionally, a list of miscellaneous grants is provided along with tips on applying for grants. This information is accessible through our website.

A Weekly Breakdown

Organizing yourself and your family, while setting up a schedule for the upcoming weeks, will surely help you cope with any other stress or confusion you and your family are currently experiencing. We plan on helping you every step of the way, and with that being said, we are happy to provide you with what can be considered a week-by-week plan on things you may want to do. This plan may help your child and family adjust to a new, and necessary way of living.

Week 1

• Start off by completing all evaluations necessary. It can be intimidating, but once your child has met all his or her physicians, you’ll then be able to know what specific therapy and treatments your child needs.

• Find additional services offered in your area that your child might need or might benefit from - start with their school to see what they offer.

• Look into your health insurance plan. The costs add up quickly, and knowing if you’re covered or not is an important aspect of finding treatment. Plan ahead if your family is going to need any financial help – look into scholarship, grants, or aid.

• Start writing daily in a diary about your child’s needs, progress, and doctor’s appointments.

Week 2

• Look into how each type of therapy is unique and how they can help your child, visit the All About Autism section on our website, and check out the General Therapies guide to better help you in this search.

• Once you’ve found and set up the services your child needs, you could look into additional services such as nutritional interventions, recreational programs, camps, and other community activities that can help facilitate the positive growth of your child.

• Let your family members know of your child’s diagnosis. It’s important they also understand your child’s behavior, and what exactly having autism means.

• Now that you’re on your second week and have hopefully begun to arrange treatments, make an estimate of monthly expenses and organize yourself financially.

Week 3

• These first week may have been hectic, but don’t forget your child is still a child. Make some time for playtime. Don’t forget to have fun!

• It’s very important now to build a team. Let your family members and close friends know how they can be helpful and how can they provide you support.

• Look into a support group. A great way to help you deal with any stress you might be facing is getting to know families that have gone or are going through the same situation. They could provide you with helpful tips and additional resources that you might not know of.

Week 4

• Create a schedule. As we’ve said before, autistic children benefit greatly from having a structured daily schedule.

• Establish a safety zone in your home. An area where your child can play without any risk of injuries or complications.

• Follow up on your team and let them know how you and your child are doing.
  Write down things that positively affect your child and things that make your child react negatively. Learning how they react to certain things is going to help immensely in the long run.

Week 5

• You’ve made it passed your first month – congratulations! It’s probably been a month full of information and doctors’ appointments for your child, but don’t forget to take care of yourself! Exhaustion does nobody any good. In the schedule, include some “me” time for yourself.

• Relate with other parents, look for support groups if you haven’t already, or follow organizations on social media to get day-to-day tips and news (Like us - @myautism). Learn about other types of services such as recreational programs, events, etc..

Week 6

• Look for baby sitters. Get to know them and how they get along with your child. After all, parents do need a break, so don’t take on more than you can handle. Ask us for our tips on finding a baby sitter pamphlet.

• Set up play dates with other parents and their children. Help your child create bonds with other children who may or may not have autism. Enrolling your child in a recreational program can be beneficial in a number of ways – ask us about our recreational programs!

Week 7

• Reorganize your paperwork. Keep every document of your child up to date and in reach for any situation. Do it electronically or on paper/hardcopy, just keep track of it.
  Stay up to date with new treatments, therapies, and opportunities within the autism community.

• Ask doctors, therapists, and teachers of your child’s progress on a regular basis - stay up to date and document it in your diary or journal.

Week 8

• Two months down - go out and have fun! Plan or attend an outdoor activity designed to include your child’s autism with the entire family, and ask your physician what you can do to make this outing for your child more enjoyable.

• Take time to sit down and read your diary. Know how far you and your family have come and acknowledge your progress. “Autism parents don’t look for perfection; they look for progress!”

Week 9

• Look into any resources or services that give you more training that can benefit both you and your child. There are always parent workshops happening (including ours); keep an eye out for them.

• Look into getting involved with local organizations that support autism, becoming more involved as an advocate or a fundraiser. A good place to start is with us! The American Autism Association has tons of opportunity for parents to get involved.

Week 10

• Look into getting your community involved in any fundraiser or charity event; it’s a great way to raise awareness. OR take action yourself, and learn how to get involved on our website.

• Monitor your and your child’s progress; monitor how far both of you have come and acknowledge your progress.

Week 11

• Continue learning about autism through research books, Internet sources, seminars, etc.
  Take some time to look into films or books about autism. Learn how autism has been portrayed in the entertainment/film industry.

• Never forget what you’re working towards. The long days, and sleepless nights pay off when you see the progress your child has made, and how they will benefit in the future.

The Autism Parent Checklist

• Sought professional services for your child

• Look for services in your area

• Checked your health plan and coverage

• Notify any teachers and school faculty of the diagnosis

• Look for support groups

• Create a structured schedule

• Establish a safety zone in your home

• Seek recreational activities

• Look for financial help (if needed)

• Let your family members know of your child’s diagnosis - whenever you’re ready!

Creating Your Child's Personal Portfolio

• Likes and dislikes

• Favorite place

• Favorite toy

• Allergies

• Contact information of parent/guardian

• What frightens them

• Any known triggers

• Best means of communication

• Home address

• Note if your child has a tendency to wander

• List of therapists and provider

• Emergency contact

• Areas of strength

• Areas in which your child has shown great progress

• If your child is verbal/non-verbal

• Favorite food

• Relaxing techniques

Now that we have reached the end of our 100 Day Kit for autism parents, it’s important to recount some key points. For a family with a child that has just received an autism diagnosis, this can be a lot of information to digest. As we have discussed, autism is a spectrum disorder and the symptoms your child presents will not be the same as every child who also has autism. It is important to keep this in mind so that you can be able to shape and center your child’s schedule, lifestyle, and treatments around their personal needs. With that being said, it is important that you take your child to the necessary professionals that can assist you with the best treatment options. Early intervention is always the best option if possible, however, not all individuals with autism are diagnosed early on. No matter where your journey with autism begins, what matters is that you are seeking the help your child needs.

A big first step in helping your child is learning about autism and continuing to do so in order to make informed decisions for them. Additionally, the best ways to help your child are to be in tune with them and seek the assistance of others when you need it. Take note of all the things your child does and listen to them. Although they may or may not be able to verbally communicate with you, you will be able to tell what they like or dislike. Although being positive is ideal, we are all human and sometimes you may feel helpless or stuck. It is completely normal to feel this way, and it is important to know you are not alone. Remember that you are a person too, and you need to be taken care of in addition to your child. It may be hard to reach out to others for help whether that be family members, friends, neighbors, or professionals, but they are all here to support you. Don’t forget that the American Autism Association is always here to assist you with our help hotline and resources any time you need it.

Your life may now be different but the love and support you have for your child is still the same, and it is important to make your child feel that love. Remember to accept your child and don’t give up or focus on negative thoughts. Don’t focus on how they are different from other children or make conclusions that they won’t have a good quality of life. Instead, focus on embracing and enjoying your child’s differences and special qualities. Encourage them and support the things that they are able to do. Always remember that your child is still a child and they can experience things outside of their set schedule and treatments. As the parents of a child with autism, you can create a life for them that they will enjoy, so find things that interest them and have fun together!