The 2020 Campaign for Milestones Families
Milestones Autism Resources
4853 Galaxy Parkway, Suite A
Warrensville Heights, OH 44128
Phone: (216) 464-7600
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.
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.
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.
"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.
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.
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.
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.
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.
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.
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.
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.
It is important that you are comfortable with discussing confidential issues about your child with each of the team members. Team members should:
Personalities may not always get along, but the most important thing is that everyone should be working towards what is best for your child.
There is a wide range of specialists who may be helpful to you and your child:
Members of your team will change through the years, as your child’s needs change or unforeseen situations occur (i.e. retirement).
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:
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.
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.
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.
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.
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.
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.
Review our Recommended Reading List for additional resources
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?
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.
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.
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Need assistance? Let Milestones be your local guide.
Unsure of where to start? Call our free Helpdesk with your questions, and we will do the research for you!
Call: (216) 464-7600 x200