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Should I get an official diagnosis of autism for my child or myself?

This question is considered by many who have a child with ASD. It is an important question to think through. Other questions naturally follow: What are the benefits of having a diagnosis? What problems may it create? For many the answer is not cut and dry. Some fear a diagnosis will hold their child back from involvement in the traditional activities of childhood or limit their child by the pre-conceived notions of those who are aware of their diagnosis. Others may worry that their child will become depressed or use it as an excuse to limit their own capabilities. These are all valid concerns.

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This is also a very important question for youth and adults who think they might be on the autism spectrum. They may wonder: Will a diagnosis affect my employment? My classmates? My family or loved ones? Will it open doors to resources and supports, or will I regret it? We will have more on this particular subject in a future blog.

Who can diagnose?

Autism is diagnosed by a psychologist or medical doctor (MD) such as a psychiatrist, neurologist, or developmental pediatrician. In the case of psychologists, many funders (private health insurance, Medicaid) prefer PhD-level licensed psychologists over masters-level psychologists. (This can be important when seeking authorization for funding services.)

How is autism diagnosed?

These professionals will use the latest version of a formal assessment instrument that has been shown to be reliable and valid. Examples include, but are not be limited to, the Autism Diagnostic Observation Schedule (ADOS), the Childhood Autism Rating Scale (CARS), the Gilliam Autism Rating Scale (GARS), and the Autism Diagnostic Interview (ADI). Pediatricians may screen for autism characteristics using the Modified Checklist for Autism in Toddlers (M-CHAT), but this is not considered to be a formal diagnostic indicator; it is viewed as suggestive of autism and may indicate the need to further assessment. Parents are encouraged to express any concerns to their pediatrician.

Here is a link to the early signs of autism: www.autismsociety-nc.org/signs-statistics

Typically, assessment results rely on direct observation and data gathered through checklists from people who know the individual and have worked with him/her for months or years, such as parents or caregivers.

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Can schools diagnose autism?

Many parents hear the word autism first from their child’s school, when their child meets the state guidelines for a Special Education Placement in the Exceptional Children’s Program under the category of autism. This is helpful in getting the child necessary academic and behavioral supports during the school day, but in most cases, schools do not formally diagnose autism. Most schools do not employ the kind of licensed professionals needed to make a formal diagnosis. Usually the school assessment is completed by an Exceptional Children Team. This assessment can produce an educational classification. This can only be used to provide support in the school setting; it is important for academic assignment but may not be adequate to meet the standards for applying for disability funding, such as Medicaid or SSI (social Security Income). It is also unlikely to satisfy the diagnostic criteria of insurance companies when they are asked to fund intensive treatment, such as applied behavior analysis (ABA) therapy, speech therapy, or occupational therapy. That said, these school assessments can complement formal diagnostic assessments should you apply for state funding or insurance coverage.

Parents can also petition for a school assessment, to formally consider whether a special education classification and resulting supports would benefit their child.

So, what are the benefits of getting a formal diagnosis of autism?

Under the DSM-5, a person diagnosed with autism spectrum disorder is classified into one of three levels of support need: Level 1 where minimal support is required, Level 2 requiring substantial support, and Level 3 requiring very substantial support. In general, persons classified at Levels 2 or 3 are moderately-to-severely impacted by their autism. They may qualify for available funding for evidence-based early intervention programs such as applied behavior analysis (ABA), which can assist the child in expanding abilities in areas such as communication, socialization, daily-living skills, and behavior.

By federal law, schools are required to offer Early Intervention for those aged 3 through 5 and Special Education from kindergarten through graduation (or until the student turns 22, if obtaining a Certificate of Attendance).

For many children with autism, early involvement in evidence-based therapies can make a remarkable difference in their ability to learn and navigate their social world. Many children, especially those needing substantial supports, benefit from additional services in addition to school.

Those who are more highly impacted by autism may need a moderate to high level of financial support in order to live as independently as possible through adulthood. Funding for this level of care is more than most families can afford. The North Carolina Innovations Medicaid Waiver for Children and Adults and Social Security Insurance for permanently disabled adults can assist when available. Unfortunately, there is a long wait for this funding. We advise families to obtain a formal diagnosis and apply for this funding and get on the Registry of Unmet Needs as early as possible.

Once the child turns 18, application can be made for Medicaid and SSI, based on ability to work, rather than parents’ income. With those benefits, a young adult can get some of the services provided by the Innovations Medicaid Waiver. Unfortunately, these funds are not extensive, and families must often pay out of pocket for some supports.

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For school-aged children, a formal diagnosis may open the door for more targeted support in the school setting. Not every child with an autism diagnosis needs special education services and the support of an Exceptional Children’s teacher in order to learn. However, many students with autism with good academic skills still struggle with social skills, behavioral and emotional self-management, and/or organizational and study skills. For these students, having documentation of autism in the school file can help teachers and administrators look at school problems through the lens of autism, rather than seeing it as non-compliance, laziness, or misbehavior. For these children, Section 504 accommodations or an Individualized Education Program (IEP) may be necessary.

Does my high-functioning child really need an autism diagnosis?

Some parents don’t see the benefit of a formal diagnosis of autism for their child. This is especially true for those whose children are so mildly impacted by their autism that it does not affect their academic performance. Often these young people may do well academically, but are overwhelmed socially and/or organizationally, creating stress and self-esteem problems. Recently, several young adults pursued diagnosis on their own, and reported that it was beneficial to learn the reason for their social struggles. For some, it can be liberating as they begin to understand how to use the strengths which come with their autism to minimize their challenges. With a diagnosis, they find therapists who can help them navigate the social world, friends who are also mildly impacted by their autism spectrum disorder, and support through programs like Vocational Rehabilitation or autism social networks.

I want to tell my child about their autism, but I don’t know how.

For some families, grappling with the problem of how to disclose the diagnosis to their child is just as real as whether to get the diagnostic assessment. Recently, ASNC held a virtual meeting with families, autism self-advocates, and others which related to this topic. The main takeaways from the meeting were the following:

• Share the news of your child’s diagnosis with your child only after you become comfortable with that reality and learn as much as you can abut autism’s impact on your child.
• Before disclosing, learn as much as you can about autism’s impact on your child so you can see the positive impact autism provides for them. (Before disclosing, note the positive impact autism has had with your child, so you can make them aware as well of autism’s gift to them.)
• Plan for the sharing ahead of time and frame their autism in their strengths.
• Only provide them with as much information as they need at the time. Don’t overwhelm them.
• Provide positive outlets for them to develop their healthy interests.
• If needed, introduce them to other famous people on the spectrum who have done great things.
• When their autism helps them make positive accomplishments, make them aware.
• Let them know that you are learning more about autism too and they can count on you to help them.
• Make sure they know that their uniqueness does not mean they are less.
• Help them find others on the autism spectrum so they can build a beneficial support network.
• Most of all, make sure they know you love them and that you will do all you can to help them succeed in life.

There are other resources available that could help explain the concept of autism to young children: https://appliedbehavioranalysisprograms.com/30-best-childrens-books-about-the-autism-spectrum/

And for older individuals and self-advocates: https://www.autismspeaks.org/blog/books-about-autism

Additionally, it may be helpful to use individualized social narratives to explain autism. These can be helpful for siblings as well.

Nancy Nestor, M.Ed, an Autism Resource Specialist in the Charlotte region, can be reached at nnestor@autismsociety-nc.org or 704-894-9678. Aleck Myers, Ph.D., LP, ASNC’s Clinical Director, can be reached at amyers@autismsociety-nc.org.

Tags: autism, autism diagnosis, autism health care, autism resources, Autism Spectrum Disorder

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