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4853 Galaxy Parkway, Suite A
Warrensville Heights, OH 44128

Phone: (216) 464-7600

Home Get Started All About ASD Frequently Asked Questions

Frequently Asked Questions

We have just received a diagnosis of autism. What should our first steps be?

If your child is younger than 3 years old, contact Bright Beginnings in Cuyahoga County at 216.698.7500 for a free assessment and therapy options. In any other Ohio county contact helpmegrow.ohio.gov. If you live outside of Ohio, contact your local early intervention program usually available from your county or city.

For a free assessment of children approaching age 3 and above, contact your local school district. Speak to the office of special education, and ask to register your child and to request an evaluation.

Every family’s situation is different. What kind of interventions and therapies are helpful will be unique based on your child’s profile, age and stage. Consulting with your child’s doctor for recommendations can also be helpful. Begin to build your team of professionals, family, friends or religious leaders to help guide you and support your family.

Contact our free Helpdesk to get recommended reading and resources to get started. We can help you prioritize your needs and next steps. Milestones has created a First Diagnosis Tool Kit that walks parents through the beginning steps of managing a new diagnosis. Also visit our overview of evidence-based interventions.

The Newly Diagnosed resources from Autism Speaks provides useful information.

The Organization for Autism Research (OAR) also offers guides for parents including The Life Guide Through Autism series.

I have just been diagnosed with autism as an adult. How can I learn more about how to move forward? Are there reading materials I should review to help me?

There are many materials out there that can help you adapt and adjust to your diagnosis. We encourage you to review a free guide from Autism Speaks called “Is it Autism and If So, What Next? A Guide for Adults”. It gives a comprehensive overview of how to tackle your diagnosis, as well as discussions about whether to disclose your diagnosis, your rights as a person with autism and how to accept your diagnosis and move forward with your life.

The Milestones Helpdesk can assist you with finding resources and providers. You may also find one-on-one consultation sessions with a Milestones autism expert helpful for support and developing a plan.

Additional Resources:

I am looking for a doctor in my area. How do I find one who works with children with autism?

Review our Resource Center for doctors, therapists, dentists, legal aids and other medical practitioners who specialize in the field of autism. Our Helpdesk can also assist with answering your questions and connecting you with providers.

How do we start the process of applying for disability benefits?

Start by reviewing the Social Security Administration's website. Disability insurance pays benefits to families who have members who are “insured,” meaning they have worked long enough and have paid Social Security taxes.

The Social Security Administration's comprehensive website details the qualifications necessary, the definition of “disabled” as pertaining to disability benefits and gives a detailed checklist of how to apply. It also has links to the applications and answers many other questions.

What is the difference between a school diagnosis and a medical diagnosis? Does my child need both?

"School diagnosis" describes an assessment for special education services. While a school assessment may be quite thorough, it often evaluates only areas of need as they relate to educational accommodations. To access most services, especially through medical insurance or your County Board of Developmental Disabilities, you will most likely still need a formal evaluation completed by a certified medical provider. The Milestones free Helpdesk can assist you with potential providers for a medical assessment.

My child was just diagnosed with autism, but their school won't enroll them in special education services. Why?

While many children with autism will be eligible for special education services through an Individualized Education Plan (IEP) under the Individuals with Disabilities Education Act (IDEA), not all meet the required criteria. A medical diagnosis, in and of itself, is not enough to meet this criteria.

To receive services under IDEA, the school must assemble a team of teachers and other school-based professionals to complete an educational assessment. While autism is one of the 14 categories, the definition/criteria for autism in an educational assessment vary from state to state. In some states, children who are diagnosed with Level 1 Autism Spectrum Disorder (previously known as Asperger's Syndrome) by a medical provider may not meet the educational diagnostic criteria.

If your child is found ineligible for IEP services, they may still be eligible for services and supports via Section 504 of the Rehabilitation Act of 1973. You may also wish to consult with an advocate or parent mentor to identify if eligible services or areas of need may have been overlooked during the educational assessment.

What is the best way to get a diagnosis for a teen or adult?

For older teens or adults seeking an assessment, contact a neurologist or psychologist. The free Milestones Helpdesk can provide more information about the type of professional to consult depending on what your goal of diagnosis is, i.e.for self knowledge vs. to access services or benefits.

Should I start teaching my child self-advocacy and life skills? What are the best ways to start building self-advocacy skills at which ages for my child with autism?

Yes! It is important to start at a young age. Self-advocacy skills begin with being able to express needs and wants as a young child. Here are tips for building self-awareness, life skills and self-advocacy at different stages of childhood. The transition to adulthood begins at 14 years old.


AGES 2-5

  • Teach how to communicate “yes” and “no.”
    • Always honor requests when reasonable to encourage beginning of self-determination.
  • Encourage child's special interests and incorporate those interests as motivators and reinforcements.
    • Foster connection between asking (or advocating) for toy and receiving it.
  • Expose child to problem-solving thought patterns by saying out-loud how you will handle a problem the child is aware of (like not having an ingredient to make a meal).
    • Always demonstrate calmness and an ability to self-manage emotions when dealing with a problem, it will help your child to do the same later on in life.
  • Encourage ability to communicate preferences for clothing, food, activities.
    • By offering the option of choosing between two good choices (t-shirt or polo, apple or banana, reading or playing a counting game) parents and teachers can foster positive decision-making.
  • Include child with Autism Spectrum Disorder (ASD) in inclusive, community-based settings and activities.
    • Typical peers will serve as models and reflectors, your child with ASD may learn appropriate social interactions and may become more aware of their innate differences.

AGES 6-10

  • Expose to healthy living principles and ensure positive experiences with positive decisions.
    • Explore recreational activities, adapted or typical.
    • Learn about good food choices and how they impact how you feel.
  • Foster an awareness of the child's strengths and challenges.
    • Teach child to request help appropriately.
    • Praise child's strengths and foster development of those strengths.
  • If cognitively appropriate, foster an awareness of what Autism Spectrum Disorder means.
    • Talk with child about common characteristics of Autism Spectrum Disorder and how they impact them.
    • Exposure to others who are well known and are the autism spectrum.
  • Help child develop a self-awareness and understand when they need help or a break.
    • Work with them to identify their strengths and weaknesses (school & community-based).
    • Design a system for the child to notify an adult when they need a sensory break.
  • Role play scenarios that may come up at school and how to deal with them.
    • Teach your child how to appropriately ask for a closer seat, different partner for a project, help with a bully.
    • Practicing these skills will provide a structured “script” to use in the moment.
  • Enroll child in social skill classes, counseling, speech therapy and/or other activities that will help your child learn more about functional communication skills.
    • Help your child develop the ability to manage anxiety or anger, particularly in public settings, by teaching ways of communicating causes for anxiety or anger to adults who can help them.
    • Foster consistent use of same communication methods at home, school and in counseling sessions.

AGES 11-13

  • Encourage your child to order at restaurants using own communication system.
    • Help write a script for practice and take to the restaurant. Remember to include when to say “Please” and “Thank you” in the script.
    • If your child uses an assisted communication device, encourage them to be patient with your server who may not be familiar with someone using assisted communication devices.
    • If something is wrong with the food, coach your child on how to get the server's help.
  • Have your child participate in planning weekends and free time.
    • Help guide the choices so your child learns reasonable options such as: “First you play a game or talk with a friend, then you can play video games.”
    • Incorporate special interests that are community-based. For example, if your child enjoys swimming, take him to a public recreational center for leisure time and help him learn to use the public pool successfully.
  • Take your child with you when running errands and make sure you allow for teaching time.
    • When you go to the bank, teach your child steps of making a deposit.
    • When going to the store, have your child be responsible for finding, unloading and paying for items (with parent's money and supervision).
    • Work with your child on increasing their self-advocacy with teachers at school, such as requesting extensions on homework, emailing teachers when they will be out of school, asking for help when needed.
    • Send your child to an appropriate camp or overnight experiences and work with them on advocating to be involved in the activities they are interested in.
  • Learn about what IDEA (Individuals with Disabilities Education Act) is and how it protects your child in school.
    • If your child is not present in your Individualized Education Plan (IEP) meetings, make sure his input has been considered including what accommodations have and have not worked
    • Teach your child to communicate with you if he is not receiving an accommodation or service that is written in the IEP.

AGES 14-18

  • Make decisions about personal items to purchase and learn about budgeting skills for those items.
    • Selecting and purchasing (with earned money) hygiene products, clothes, food.
    • Being responsible for keeping track of when personal items need to be purchased.
  • Explore their interests through volunteering, internships or summer jobs. Look at vocational tracks in their areas of interest.
  • Attend camps or overnight stays where they will have to make their desires known to get to do what they want.
  • Direct their own IEP meetings (ask a parent or teacher for help preparing).
    • In the Self-Advocacy Toolkit [add link] you will find helpful resources detailing the planning process for becoming the leader of your IEP meetings.
    • Review long-term goals with family and loved ones before IEP meeting, and have a script to explain what the long-term goals are for planning your transition services.
  • Write an Accommodations Letter to their future teachers or employers.
    • Explain how their disability impacts them and any reasonable accommodations they need to be successful in school or in the workplace.
    • Highlight their strengths and the value they can contribute to a team.
  • Ask for help finding possible mentors in their community.
    • Learning from someone with a similar disability who is older and has achieved some successes will help them make choices about their future and will provide another support.
  • Make their own doctor and other medical appointments.
    • Carry their own necessary documents (e.g. insurance, ID).
    • Understand what their medications are, when they need to take them and how to refill them.
    • Make sure they put a calendar reminder for those medications they have to make a doctor’s appointment to refill.
    • Start being responsible for taking their medications with supervision.
  • Register to vote and if they are a male they must, regardless of their disability, register for the draft.
    • Even if parents choose to remain their guardian they still have the right to vote and they still must register with the military.
  • If appropriate have your child help search for post high school options and get to know the support people who they would be working with.

My child/student's IEP lists some other disability category (i.e. emotional disturbance, intellectual disability) than autism spectrum disorder, why is this?

The school-based assessment is intended to identify areas of need as they relate to classroom functioning. If a child is having difficulty regulating their emotions intheclassroom, or struggles with the curriculum, among other possible areas of need, the school assessment team may determine what the primary area of need is and to check only one box that corresponds.

If you have disagreements about the diagnosis listed on the IEP, you may wish to raise your concerns during an IEP meeting. An advocate may also be able to assist you. Regardless of whether the autism diagnosis is the box checked on the IEP, all medical diagnoses should be reflected in the summary section. Copies of the completed medical assessments should also be included as addendum items and kept on record with the school.

How do I build my team to best help my child?

BUILDING YOUR TEAM

Your team is a group of people you can call on as needed to help you meet the needs of your child’s progress. They are concerned about your child’s well-being, best interests, development and medical needs.


WHO SHOULD BE MY TEAM LEADER?

Typically the parent is the primary team leader. As the parent, you are the main advocate for your child, and you are the expert on your child’s needs. However, if that is not possible, you should choose someone your family is comfortable with and who knows the range of issues your child may encounter, as well as the medical, educational and general family needs for your situation.


HOW DO I BEGIN TO BUILD A TEAM?

Start with an evidence-based nonprofit like Milestones or government resources like the Centers for Disease Control (CDC). Educate yourself on the options available to you and the intervention methods you want to try based on your child’s strengths, challenges and needs. Contact the professionals you want to include and make appointments to meet with them, preferably with your child. You want your team to know your child personally, and they will want to assess your child for themselves. If your child is in school, ask to set up a meeting with all school professionals who may interact with your child.


HOW DO I DECIDE WHO I WANT ON MY TEAM?

It is important that you are comfortable with discussing confidential issues about your child with each of the team members. Team members should:

  • have a strong understanding of what is appropriate developmentally for your child in their specific field of expertise.
  • be willing to refer you to the right people, should you need to expand your team.
  • be willing to listen and learn, and not be defensive when you have a different opinion than they do.

Personalities may not always get along, but the most important thing is that everyone should be working towards what is best for your child.


WHO MIGHT I WANT ON THE TEAM WITH ME?

There is a wide range of specialists who may be helpful to you and your child:

  • Your county’s Board of Developmental Disabilities support administrator, which is the resource for funding.
  • Specialized therapists (behavior therapist; ABA therapist; speech, occupational and physical therapist; music).
  • Primary physician.
  • Psychologist or psychiatrist.
  • Neurologist.
  • Dietary specialists.
  • Behavior consultant.
  • Teachers.
  • Parent mentors.
  • Support organization representatives (like Milestones).
  • Babysitters or respite providers.
  • Religiousleader, family or close friends.

Members of your team will change through the years, as your child’s needs change or unforeseen situations occur (i.e. retirement).


WHAT CAN THE TEAM DO TO HELP MY CHILD?

Your team can help guide you on your journey of raising a child with Autism Spectrum Disorder (ASD). As they have different roles on your team, they can assist in a wide variety of areas, such as:

  • Serving as a sounding board for any issues or problems your child may be having.
  • Helping assess and develop plans for their more challenging behaviors.
  • Evaluating the effectiveness of their medications including side effects.
  • Being good listeners and offering you support.
  • Providing respite for you.
  • Helping you with day-to-day responsibilities or errands, so you can focus on your child.
  • Recommending therapists, social groups, or activities for your child to participate in.

HOW OFTEN DOES OUR TEAM NEED TO MEET?

Just as every child with ASD is different, every team serving a child will be different. Meeting as a group may not be necessary, for example, you may have a mini-team with a common goal that meets periodically (i.e. a school team). Or, you may determine that a regularly scheduled discussion may be imperative. Just keep in mind that scheduling may prove to be challenging, especially when involving medical experts. There will always be a period of trial and error, until you are able to figure out what works best for you.


HOW DO I KEEP TRACK OF ALL OF THAT INFORMATION?

Having a child with ASD creates mounds of paperwork—it is important to stay organized and keep everything easily accessible. Creating a binder or online file with all the information is a good way to make sure everything is in one place. It is also a good idea to have a section with your child’s general medical history, including any ER visits and other important medical information (allergies, asthma, food issues, etc.). You may also be able to access your child’s medical information through a patient portal on your computer or through an app on your phone.

Always share current goals and behavior interventions with your team.


WHAT HAPPENS IF THE TEAM DOES NOT AGREE ON SOMETHING?

If your team disagrees on a treatment plan and you do not have control over the outcome (for example, while your child is in school), you do have some recourse to work towards a compromise. See Navigating the IEP Process.

If the team disagrees on another subject that is not school related, as the parent you have the final say on what is best for your child. Research as much as you can, speak to knowledgeable parent mentors and look to other resources whose opinions you trust before making a final decision.

What is Applied Behavior Analysis (ABA)?

ABA is a system for learning where skills are considered behaviors from greetings to toothbrushing to learning a job. ABA features errorless learning, including systematic fading of prompts, focusing on small steps that are chained together, generalized across people and settings. Motivation and reinforcement are important components. To find out more, visit our interventions page.

What Is an IEP?

IEP stands for Individualized Education Plan and is the legal document that sets your child’s yearly educational goals. This document is designed to meet the educational needs for a child who has a disability. It is drafted by a group of team members geared towards obtaining the best educational support for a child. The start of this process involves a multi-factored evaluation through your school district. Visit our IEP page for more details.

What is Transition Planning?

Transition Planning is a coordinated set of activities that are focused on the academic and functional abilities of a student with a disability to achieve success after graduation from high school. A Transition Plan is individualized, relies on multiple staff and providers and is embedded into the goals and services in the IEP.

In Ohio, transition planning legally must begin by the age of 14 or younger if determined appropriate by the IEP team. Federal law mandates that transition planning begin by the age of 16. Transition Planning must address services and skills needed to attain any post-secondary education options, employment, independent living, community living (including leisure activities) as well as connecting to adult provider agencies.

Visit the Transition to Adulthood section of the website for more information.

How should I prepare my child for the new school year?

GETTING YOUR CHILD WITH ASD READY FOR THE NEW SCHOOL YEAR

THREE WEEKS BEFORE:

  • Look at a calendar with your child. Mark the first day of school.
  • Take your child to buy supplies.

TWO WEEKS BEFORE:

  • Make or read a social story about going back to school.
  • Arrange a play date with a school friend or classmate.
  • Make visits to the school playground.

ONE WEEK BEFORE:

  • Schedule an appointment to meet your child’s teacher at school.
  • Make visits to the school playground.
  • Adjust your child’s sleep schedule so it’s in sync with a healthy school sleep schedule.

ONE OR TWO DAYS BEFORE:

  • Visit your child’s classroom(s), including specialty rooms (art, gym, music), if you can.
  • Meet the teacher.
  • Share an index card of helpful hints about your child with the teacher. You may want to include what motivates him, his strengths and a few targeted goals. Consider emailing a thank you afterwards that includes the helpful hints you want to reinforce and that you’ll look forward to being in touch during the school year to support the teacher in helping your child.
  • Visit the cafeteria, office and health clinic.
  • Play on the playground.
  • Take photos of your visit to review at home. (You can use to create a social story.)

ONGOING THROUGHOUT THE YEAR:

  • Figure out the best communication process that works for you and the school.
  • Schedule observations of your child during the school day to see how he is doing.
  • Offer to volunteer in your child’s classroom, if your schedule permits and you think your child can handle it.
  • Request teachers send homework samples to see how your child’s skills are progressing.
  • Call for meetings whenever you find there is an issue that needs discussion.
  • Encourage your child’s teachers to keep you informed of any problems that come up and how they are resolved.
  • Keep a notebook and bring this notebook to all school meetings. The notebook should include: the current IEP, psychological and other evaluations, home goals, speech therapy goals and any notes from your observations.
  • Make sure you show your appreciation for teacher cooperation. A heartfelt note from you can be a wonderful gift for a teacher.

Review our Recommended Reading List for additional resources

How should I prepare for my child riding the school bus?

Prior to the beginning of the school year, contact the transportation office to confirm your child’s bus information, and to find out any particulars about procedures. If needed, you can ask if there is a special bus or van for children with disabilities that your child could take. Can your child’s bus stop be at your driveway rather than at the corner? Can your child bring a book or gum on the bus? Does your driver have experience with kids with autism?

  • Training information for bus drivers is available online - there are some listed in bullets below. Make a copy for your bus driver if they do not have experience with autism.
  • If you feel you need to, disclose your child’s disability personally to bus personnel. The staff may not have been told your child has special needs or autism – in some school districts, this information is not disclosed to the bus driver.
  • Make sure there is an aide on board, if necessary. (A bus aide would need to be written into your child’s IEP.)
  • If your child has any medical needs, make sure the transportation staff is trained prior to the first day.
  • If sensory overload is a concern because of loud noises, ask permission for your child to wear headphones or earplugs on the bus.
  • If riding the bus is a new experience for your child, see if he/she can be assigned a seat near or behind the driver so he/she knows when to get off.
  • Check with your school district to see if it offers a bus introduction event for young children, if your child has never ridden on a bus. It will give your child a chance to ride on a bus with you first.
  • Find books from the library or YouTube videos about riding the bus and read them together. This is called “priming.” You can also make your own video.
  • Create a social story on how to behave on the bus and what to do when the bus gets to school.
  • Create a visual schedule for your child to carry in his/her backpack that goes through the bus riding experience, if you think it will help.
  • Autism Speaks offers a comprehensive guide for Bus Drivers and Transportation Supervisors.

How do I get my child in the community participating in activities and find social outlets right for them? How do I help avoid meltdowns or inappropriate interactions?

Building on your child’s interests to find activities they may enjoy can be a great way to find social opportunities. Ensure you have the right supports in place to make the experience successful by talking with the organizer first about expectations of the class and quick tips for supporting your child. Take that information and use social stories and/or picture schedules to prepare your child. Think through potential challenges the activity might present for your child’s sensory issues such as lights, sounds and smells. Watch your child for what seems to set off a meltdown, whether environment, people, types of interactions or sensory challenges that you might be able to structure supports or adaptations or avoid.

The Milestones Afterschool Activities & Independent Leisure Skills Toolkit includes strategies for developing what to do when they have unstructured downtime, finding activities, using rewards and prompts and building in exercise.

Milestones offers a calendar of events in Northeast Ohio as well as this list of social recreational opportunities. You may also contact our Helpdesk or consider setting up individual or family consultations to get more in-depth assistance.

How can I make outings in the community positive experiences?

Going out for even the simplest excursions can be challenging, but with a little planning ahead, they can be enjoyable for everyone.

Most importantly, you need to determine which activities are priorities for your family, whether it’s eating out in restaurants, going to parks, attending religious services or shopping at the mall.

Compile your list of favorite restaurants, local recreation centers, playgrounds or events within your religious community. By building routines around your community with this list of favorites, your child and your family won’t feel isolated.

Also, look for outings that would be a particularly good fit for your child. Fewer people, a quieter activity or catering to a particular interest of theirs might help them adapt more readily.

How can I prepare my child before we leave the house?

  • Review the routine with your child before your outing.
  • Talk about what your child should and should not do (i.e. “You need to stay in this part of the park.” “You should not make loud noises while in the restaurant.”).
  • Role play the activity with your child while at home, so you can model what your expectations are.
  • Use social stories whenever applicable to prepare your child for a new experience.
  • Use a visual (written or pictorial) list of steps the child can expect. This list can also include sample language for the child to use.
  • Bring any items such as sunglasses, a hat or earplugs that may help your child if they have sensory needs.

How can I prepare other people before my child’s outing or activity?

  • If you plan to involve your child in community events, social groups or extracurricular activities, present your child’s diagnosis or your child’s challenges (as well as their strengths) up front, either at registration or to the person in charge of the event.
  • Alert the instructor or leader of any specific activities your child might have difficulty with or react to negatively. Give them tips on how to help your child through stumbling blocks.

What can I do while we are out and about?

  • Be prepared with favorite activities and snacks (if permissible) for doctors’ offices or anywhere else you might have a wait.
  • Give your child an activity when you are on an errand (i.e. checking off the grocery list as you shop).
  • Praise your child for their positive behavior.
  • Continue to refer your child to appropriate social stories or visuals as necessary throughout the outing.

What if my child has a meltdown or tantrum in public?

  • If your child has meltdowns or is rude to someone in public, you have a few different options. You may need to experiment to determine what works best for your family.
  • If your older child has been rude, it would be a good lesson to bring your child over to apologize to the offended party. This reminds them there are consequences for our actions.
  • If your child is younger and is being disruptive or rude, you might share with the offended persons that your child has special needs and you apologize for their inappropriate behavior or rudeness.
  • Sometimes, you do not have the ability to stop and speak to people your child has offended, especially if they are mid-tantrum! Some people carry cards with them to distribute as they remove their child from the situation. The cards could say something as simple as “I apologize for my child’s behavior. She has special needs.” Or, they could indicate that your child has autism, if you wish to divulge that information.
  • Remove yourselves from the situation as swiftly as possible to a quiet place where your child can calm down.
  • Consult other families to see what has worked for them, or talk to professional members of your team. They may have suggestions on how to handle your child’s outbursts.

Additional Resources

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