You may feel a bit overwhelmed if your child recently received an autism spectrum disorder (ASD) diagnosis. A myriad of feelings come when you receive this type of news, such as denial, grief, anger—these are completely normal. Along with this is an instinct of immediately wanting to do what’s best for your child, but knowing very little about autism until this very moment. You may not know where to start looking for autism resources.
There are other reasons you may be looking for resources. Perhaps you suspect your child has autism or you’re well-versed with autism spectrum disorder (ASD) but need additional help, such as from the Department of Education. There are many different types of resources available for each specific need. Read on to learn more about the different types of autism resources available nationwide as well as how to find resources local to you.
Diagnosis and Evaluation
Researchers and scientists are now able to detect autism spectrum disorder before the age of 2. If you suspect autism or another type of developmental delay (such as your child significantly missing milestones), it’s best to contact your pediatrician as a first course of action. For an autism diagnosis, the gold standard is the Autism Diagnostic Observation Schedule (ADOS), which is typically performed by a clinical psychologist or psychiatrist. This is a test your developmental pediatrician may be able to administer, or you’ll get a referral to an individual or agency that can perform the ADOS. It can be performed in-home or in-clinic. However, there are other national diagnosis and evaluation resources here, if you’d like to find something specific to your area that does not go through your pediatrician’s referral.
A Bit of Reading
You may find it helpful to do some reading about autism and how to best help your child. However, there are many false statements about autism on the internet, and bumping into that information could cause you to be confused and even angry. It’s a good idea to stick to nationally recognized autism organizations and institutions and medical journals, which can be found on PubMed.gov, for the most correct information.
One thing you may find helpful at the outset is the 100 Days Kit for Young Children. There is also a guide for school-age children if your child was diagnosed a little later.
The clinician who provided your child’s diagnosis likely provided you with some information at the time, but it’s very understandable to forget later on after being in that moment. The 100 Days kit addresses questions and information, such as:
- What is autism?
- Signs and symptoms of autism
- Response to the diagnosis
- How to understand your child’s behavior
- How autism is treated
- Getting help for your child (and yourself)
- Living with autism
- A sample week-by-week plan for the first 100 days
The 100 Day Kit for School Age Children provides much of the same information but also includes a section on dealing with autism in the classroom.
For a collection of informative blogs related to autism, with topics such as, “Autism Spectrum Disorder Across the Lfiespan,” “Understanding Autism,” and “Individuals with Autism and Relationships,” go to The Arc: Autism Now. Not only are there resources for parents, but there are also resources for educators, professionals that work in the field, and people who just want to learn more about autism. There is a wide selection of blogs and additional resources.
If you prefer hard copies of materials and books you can read at home, The Organization for Autism Research (OAR) has materials for your child, on safety, about transitions to adulthood, how to navigate the public school system, and general information about autism for both parents and educators. Many materials are available in both English and Spanish. However, keep in mind not all of these materials are free of charge and are available in their online store.
Early Intervention
One of the most helpful and important actions you can take after a new ASD diagnosis is to immediately provide your child with early intervention services. Studies have shown that children with autism who receive early intervention services have better outcomes. Early intervention may be provided in your specific state by a state agency, or you may have to search outside providers (to be covered in a later section). These early interventions may take the form of occupational therapy (OT), physical therapy (PT), speech therapy, and applied behavior analysis (ABA) therapy.
To learn more about autism and to read about evidence-based practices and treatment for autism, such as ABA, read the National Autism Center’s ‘A Parent’s Guide to Evidence-based Practice and Autism’, which can be downloaded for free after registration on their site. The National Center for Autism also has a wealth of knowledge and information in their “Autism: A Closer Look” online library. There are many articles on how to handle different situations (such as trick-or-treating), with articles relevant to young children, older children, adolescents, and adults with autism. Also, there are many other resources, such as for parents and families and educators.
Navigating the Public School System
Depending on the age of your child, you’re going to enter into unknown areas such as working with other areas of the public school system. If you participated in early intervention programming, your care team will help guide you through the transition into the public school system, which in most states is at the age of 3. Once your child turns 3, they fall under the umbrella of the public school system and this is how some services will be delivered going forward. However, special education and your child’s rights can get complicated, so it’s wise to try to understand the process before your first individualized education plan (IEP) meeting.
Many public school administrators are there to help and support you, but you’ll need to stay on top of the support system in place for your child.
OAR, as mentioned above, has a terrific free resource on navigating public schools, and the pdf is free for download here. It helps explain the Individuals with Disabilities Education Act (IDEA), so you can better understand your child’s rights and the foundations for your child’s IEP. This guide also has a wealth of information about dissecting the IEP, from early intervention in childhood through transitioning to adulthood. There is a section on advocacy, as well as a section for military families and how to handle moving often.
The foundations of IDEA are to have children with disabilities of any type have access to a free and appropriate public education and the least restrictive environment. A child with autism has rights to special education services, assistive technology if needed (such as AAC devices), and to attend Extended School Year (ESY), which is a less demanding school program that occurs over the summer. Autism Speaks has a page on understanding public school and your child’s rights, and that page can be found here.
For further reading on IDEA and public education, you can access several resources. The U.S. Department of Education has a page dedicated to helping parents and others understand IDEA. This page also provides links to the Office of Special Education and Rehabilitative Services (OSERS) and the Office of Special Education Programs (OSEP). This is a good resource for comprehensive information about laws and how they affect your situation.
You can also visit the U.S. Department of Education Office of Civil Rights (OCR) website. If you are in a situation where you feel your child has been discriminated against because of their disability or you feel their civil rights have been violated, you can file a complaint with the OCR. This page also provides information about civil rights and public education.
Finding Service Providers
Even the best of IEPs can only provide a certain amount of occupational therapy (OT), physical therapy (PT), and speech therapy per week or year, depending on how their system is implemented. Also, unless your child is in an autism-specific classroom, children don’t typically receive ABA therapy under the public school umbrella.
If you feel your child’s OT, PT, and speech are inadequate at school, many states allow you to add outside service providers to help your child thrive in those areas. It’s also important to find a reputable ABA company and therapy team that builds a solid rapport with your child. However, it may be a bit daunting to begin using search engines to find providers. The Autism Society provides a comprehensive search page dedicated to autism-related service providers of many types, and you can tailor it to your state. This includes services and providers such as:
- Adult day programs
- Adult residential care
- Afterschool programs
- Assistive technology
- Camps and recreation programs
- Dentist services
- Driving services (programs to teach those with autism how to drive)
- Early intervention services
- College, public school, and private school information and resources
- Faith-related resources
- Advocates and legal services
- Parent training resources
- Developmental pediatrician and physician
- Respite services
- ABA therapy
- Other therapies, such as OT, PT, and speech
You can search your state or any U.S. territory using the drop-down menu and can add additional keywords to refine your search if needed. The search page can be found here.
ABA therapy can begin and is valuable at any age, but if your child is of school age or under, it’s one of the most important outside therapies to consider. It is an evidence and science-based therapy intervention that can help with behavior, communication, and independence. ABA can take place at home in your child’s natural environment, or it can take place in a clinic. Through modeling, positive reinforcement, and other methods, certified behavior therapists can help improve unwanted behaviors and promote positive outcomes. Many ABA therapists and companies have a waiting list, so if you’ve just received a diagnosis, this is one of the first things to seek out so your child can have access to services sooner.
More Comprehensive Resources and Services
There are other types of resources and services available that you may want to consider. Autism Speaks has a resource guide search page with links to many different types of services. From here, you can use the drop-down menu to customize the search to your area. The Resources page can be found here and includes information on:
- Advocacy
- Financial planners
- Legal resources
- Parent training
- After-school programs
- Art and music programs
- Equine programs
- Hairstylists
- Swim instructors and swim safety
- Employment supports
- Transitional programs
- Vocational rehabilitation
- Autism evaluation and diagnosis
- Developmental pediatricians
- Psychiatrists
- Psychologists and therapists
- Telehealth therapy
- Medical specialists, such as allergists, gastroenterologists, orthodontists, urologists, and more
- Residential and day programs
- Transportation
- Community activities
- Respite care
- Social skills groups (both in-person and virtual)
- Homeschooling information
- Public school information
- Private school information
- Social Security resources
- Support groups
- Treatments and therapies, such as ABA, PT, OT, speech therapy, etc.
- Medicaid waiver information
This is not a comprehensive list—there are other resources available on the page as well.
Our own website also has many local resources.
Resources Dedicated to Parents
While you’re likely searching for information and resources to help your child, you need support too. Autism Navigator has an online community as well as many other helpful videos and resources for parents of children with autism or suspected autism from infancy to age 8. In the virtual community, you can ask questions, get other feedback from parents, and talk to people who understand what you’re going through.
The Center for Parent Information & Resources also provides parents of children with autism with helpful information. They have many parent centers and resources in different states where you can join a support group or online community.
One of the best resources you may find, however, is on social media. For example, on Facebook, there are many private and public groups dedicated to parent support for children with autism. Use the search bar to type in different parameters that may help you find online and in-person groups in your area. If “autism” along with your area doesn’t offer many results, try terms such as “special needs,” as many communities are dedicated to all children with special needs, not just those with autism. You’ll find resources local to your town and state, and there are many national and international groups as well. This is a great way to connect with other parents that understand exactly what you’re going through.
Resources Local to Philadelphia
If you’re in search of resources local to Philadelphia, there are certainly some resources out there. They include:
- The Philadelphia Autism Project (resources on the website and in the community for those with autism, their loved ones, and the community)
- The Autism Society of Greater Philadelphia (also provides events, community resources, and information via their site)
- Acclaim Autism (ABA therapy)
Other Resources
Other national resources for autism you may find helpful include:
- The Asperger/Autism Network
- Autism Highway
- Disability Scoop (news for all disabilities)
- MyAutismTeam
- Sesame Street in Communities: Autism
A quick search engine lookup should also provide you with more details if you’re looking for more specific autism resources. There are many out there to help support you and your child.
