The months leading up to an Autism diagnosis are filled with so many phone calls, appointments and worry that by the time most parents get an actual diagnosis they are emotionally exhausted. For months it feels like hearing a diagnosis will be the end of the road but in reality it is the start of a very long and winding detour.
I have been through this detour process three times now and I still had to spend hours thinking about who to call, what services do I need to get in place, what appointments need to be made– all while juggling my emotional state and the numerous phone calls and messages from friends and family. I want to help other parent’s avoid the added stress by having a “manual” of what needs to get done and when.
Please remember that this is a general outline and some people may need to move through the steps faster or slower than others. Remember to seek social support and take care of yourself throughout this process.
The First Phase
- Take a breath and grab a notebook
- Get as much information on what Autism is as possible
- Call your child’s primary care doctor to update your child’s diagnosis and bring copies of the evaluation to the doctor for their records
- Under age 3:
- If you do not have early intervention services already check out who to call in your state here
- If you have early intervention services call your case coordinator to ask for an IFSP meeting to add more services
- Over age 3:
- If you do not already have an IEP, call your local school to ask for an initial evaluation to determine if your child qualifies for special education services. It is also important to write a letter and send it by certified mail to your school as physical proof of your request. Your school will send you a consent form and once you give your consent the school has 60 school days to complete the evaluation. From that point they will have an IEP meeting to determine eligibility.
- If you already have an IEP, call the contact person listed on your IEP to ask for an IEP meeting to discuss additional services.
- Once your IEP meeting is scheduled start on your IEP Meeting Preparation with an agenda
- Call your insurance company to ask what services are covered. Ask about: ABA, Speech, Occupational Therapy, Neurologists, Genetic Testing, and any other specialists you may need. It is also helpful to ask if you will need a referral and who your in-network providers are
- If you are not happy with what services your insurance covers, the copayment or the providers they cover it can be helpful to contact your state’s medicaid department and apply for coverage. Many states will offer additional or back up coverage for children with disabilities like Autism.
The Second Phase
- Now that you know what services you’re able to access through your insurance, think about whether you want any of those therapies for your child and if so research local agencies who provide that service.
- Call local agencies to get more information, get on their wait list or schedule an intake. Even if you plan to get services through your school or early intervention company it can be helpful to have private services to help with daily living skills and routines at home.
- Take your time and find the organizations that best fit your family values, vision for your child and match your personality
The Third Phase
- Visit with your child’s primary care doctor and discuss any specialist your child would benefit from seeing. These may include: genetic testing, a developmental pediatrician, a neurologist, a gastroenterologist, an audiologist, an allergist, a feeding specialist, etc.
- Make appointments with any necessary specialists
- Follow up with any phone calls or paperwork
The Fourth Phase
- Join Facebook support groups based on your needs. Try searching: “Autism”, “Sensory Processing”, “Non Speaking”, “Special Needs” or “Neurodiverse”. Also consider looking for Facebook groups in your local area
- Get connected with other parents as you start to build your support network
- Try out visuals and different parenting techniques
- Research sensory activities, tools and toys that would help keep your child regulated
The Fifth Phase
- Research any other services you may need through the Autism Speaks State Directory: think about social skills groups, dentists that specialize with Autism, sensory friendly haircuts, respite care, service dogs, etc.
- Get involved with local agencies through the Autism Speaks Local Directory or The Autism Now Local Directory
- Continue to build your “special needs parents support network” through Facebook groups, mutual friends, Autism events and local organizations
- Consider whether it would be helpful for you or other family members to get individual or family therapy to help with these transitions
- Consider applying for Social Security Disability Benefits to offset the costs of raising a child with Autism
- Consider applying for Developmental Disability Services through your state for additional benefits
- Think about adaptive recreation programs and extracurricular activities that would be a good fit for your child