Navigating Your Child’s Autism Diagnosis: Understanding Levels and Getting Support

When your child is diagnosed with autism spectrum disorder (ASD), it often brings a mix of emotions. You may feel relieved to finally have an explanation for some of your child’s behaviors and challenges. But you may also feel overwhelmed about what it all means for your child’s future.

If your child has what used to be called high-functioning autism or Asperger’s syndrome, explaining their diagnosis to others can be especially tricky. Unlike children with more extensive support needs, their autism traits may not be as immediately obvious to others.

This can lead to misunderstandings and stigma if people only see your child’s “odd” behaviors without understanding the context. But disclosing their diagnosis also comes with risks like discrimination. So how do you balance those considerations and handle discussions about your child’s autism?

Navigating Your Child's Autism Diagnosis
Navigating Your Child’s Autism Diagnosis

Why Mild Autism Can Be Confusing for Others

Children with autism spectrum disorder (ASD) have challenges with social communication and interaction as well as restricted, repetitive patterns of behavior. But there is a wide range in how those core symptoms present.

Children on the milder end of the spectrum, now often called Level 1 ASD or autism with low support needs, tend to have average or above-average intelligence. They are considered “high-functioning” in many ways. But they still face struggles that neurotypical children do not.

Some of the confusing behaviors that can arise with mild autism include:

  • Having an emotional meltdown when routines are disrupted
  • Failing to complete tasks or tests due to unexpected changes
  • Experiencing sensory overload from lights, sounds, etc.
  • Misinterpreting social cues and unintentionally invading personal space
  • Dressing formally when an informal outfit is expected
  • Infodumping excessively about special interests

These types of behaviors often come without warning to those unfamiliar with autism. Understandably, it can be jarring and upsetting when a child who seems “normal” suddenly acts in these unpredictable ways.

Some people may mistakenly think the child is being defiant or intentionally odd. But in reality, these are manifestations of the social communication, sensory regulation, and flexibility challenges associated with autism.

The Risks of Disclosing an Autism Diagnosis

In an ideal world, disclosing your child’s autism diagnosis could help those around them be more compassionate and supportive. But realistically, revealing a disability can open the door to stigma and limit opportunities.

Some specific risks include:

  • Discrimination at school: Teachers with limited autism experience may have lower expectations for your child or be quicker to punish autistic behaviors. Your child may be segregated into special education classes even if they are academically capable.
  • Social exclusion: Neurotypical peers may avoid befriending your child once they know about the autism label.
  • Loss of opportunities: Program leaders, employers, etc. may decide they are unequipped to accommodate your child’s needs.
  • Damage to self-esteem: Your child may feel bad about themselves or broken if they know they have an official diagnosis.

Because of these potential downsides, some parents choose to keep their child’s autism private, especially in environments where it would not be an obvious disability.

Navigating When to Disclose Your Child’s Diagnosis

There is no one-size-fits-all approach to deciding when to tell others about your child’s autism. Considerations include:

  • Your child’s preferences: Talk to your child about how they feel about sharing their diagnosis if they are old enough. Allow them to take the lead in disclosing to friends.
  • Need for accommodations: If your child needs specific supports to succeed in a program, it may be necessary to explain their needs.
  • Your child’s self-awareness: If your child does not know about their diagnosis yet, you will need to be more selective in who you tell.
  • The setting: Some environments like school legally cannot discriminate based on disability. Others like clubs have more leeway in who they accept.
  • Stigma in the community: Sadly, autism stigma still exists. Take the temperature of how accepting an environment is before disclosing.

Telling Your Child About Their Diagnosis

If your child is higher functioning, you may wonder if you should tell them they have autism at all. Some parents worry the diagnosis will damage their self-esteem unnecessarily.

But autistic advocates increasingly encourage telling children, especially by middle childhood. The benefits can include:

  • Better self-understanding: They will realize there is an explanation for their difficulties.
  • Finding community: They can connect with other autistic people and see they are not alone.
  • Accessing support: They can take advantage of accommodations and therapies.

Ideally, use age-appropriate language focused on your child’s unique mix of strengths and challenges. Emphasize that autism is just a different way of seeing the world – not something to be ashamed of.

Explaining Your Child’s Needs Without a Label

If you decide not to disclose the autism diagnosis in a particular setting, you can still advocate for your child’s needs. The key is focusing on specific help they require rather than using the label.

For example, you could say:

“My child can get overwhelmed when there are sudden changes in routine. It would help if we could develop some supports to make transitions easier for them.”

This way, you are addressing the issues without revealing the cause. Most people will still try their best to help, even without the autism label.

Finding the Right Support for Your Child’s Needs

Regardless of whether you disclose the diagnosis, it is important to surround your child with services and professionals who understand autism. This includes:

  • ABA therapy: Applied behavior analysis is the most effective autism treatment. It develops communication, social, and life skills through positive reinforcement. In-home ABA in Maryland from Jade ABA Therapy provides customized therapy focused on your child’s unique needs.
  • Special education services: If your child has an autism diagnosis, they qualify for an Individualized Education Program (IEP) and accommodations at public school. Private schools specializing in autism may also be an option.
  • Speech, occupational, and mental health therapy: Addressing needs like sensory processing, anxiety, and executive functioning skills allows your child to thrive.
  • Social skills groups: Help your child learn to interact through peer groups designed for autistic youth.
  • Transition planning: Prepare your teen for adulthood through programs that teach independent living skills.

With the right support, your child can gain self-confidence and learn to navigate the world as an autistic person, regardless of who knows their diagnosis. If you are seeking personalized ABA therapy from compassionate professionals in Maryland, contact Jade ABA Therapy today to get started.

References

[1] Sandler, S. & Rosenthal, M. (n.d.). Should parents tell their children they have Asperger’s? Autism Spectrum News. https://autismspectrumnews.org/should-parents-tell-their-children-they-have-aspergers/

[2] Masi, A., DeMayo, M. M., Glozier, N., & Guastella, A. J. (2017). An overview of autism spectrum disorder, heterogeneity and treatment options. Neuroscience bulletin, 33(2), 183–193. https://doi.org/10.1007/s12264-017-0100-y

[3] Autism Society. (n.d.). Asperger’s syndrome. https://www.autism-society.org/what-is/aspergers-syndrome/

[4] Jade ABA Therapy. (n.d.). Home page. https://www.jadeaba.org/

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