Uniquely Human

1. Autism is a different way of being human, not an illness to be cured

The behavior of people with autism isn't random, deviant, or bizarre, as many professionals have called it for decades. These children don't come from Mars.

Reframing autism. Autism is not a disease to be eradicated, but a neurological difference that shapes how individuals perceive and interact with the world. This perspective shift is crucial for parents, educators, and society at large. Instead of trying to "fix" or "normalize" people with autism, the focus should be on understanding their unique experiences and providing appropriate support.

Neurodiversity in action. People with autism have different strengths and challenges, just like all humans. Some may excel in pattern recognition or have extraordinary memory, while others might struggle with social interactions or sensory processing. Recognizing and nurturing these individual differences can lead to more fulfilling lives for people with autism and richer, more diverse communities for everyone.

2. Listen and observe to understand the meaning behind "autistic behaviors"

There is no such thing as autistic behavior. These are all human behaviors and human responses based on a person's experience.

The power of observation. By carefully watching and listening to individuals with autism, we can uncover the underlying reasons for their actions. What might seem like "odd" behavior often serves a purpose, such as self-regulation or communication.

Examples of misunderstood behaviors:

• Echolalia (repeating words or phrases): Can be a way of processing information or expressing emotions
• Hand-flapping or rocking: Often a self-soothing mechanism or expression of excitement
• Avoiding eye contact: May help the person focus on what's being said without the distraction of facial expressions

Asking "why?" Instead of trying to eliminate these behaviors, it's more productive to understand their function and, if necessary, find alternative ways to meet the same needs.

3. Embrace and build upon enthusiasms rather than discourage them

Clara and David had a particularly constructive attitude toward the many subjects that attracted their daughter's focus, no matter how unusual they were.

Harnessing passions. Special interests or "enthusiasms" can be powerful motivators for learning and growth. Rather than viewing these intense focuses as problematic, they can be used as gateways to broader understanding and skill development.

Strategies for leveraging interests:

• Use the enthusiasm as a reward for completing other tasks
• Incorporate the interest into academic lessons (e.g., using train schedules to teach math)
• Encourage social connections through shared interests
• Explore career paths related to the area of passion

Balancing interests. While it's important to support these enthusiasms, it's also crucial to help individuals develop a range of interests and skills. The goal is to use the passion as a bridge to broader engagement with the world.

4. Trust, fear, and control are central challenges for individuals with autism

The opposite of anxiety isn't calm, it's trust.

Building trust. For many people with autism, the world can feel unpredictable and overwhelming. Establishing trust through consistent, supportive relationships is crucial for reducing anxiety and promoting growth.

Sources of fear and anxiety:

• Sensory overload
• Unexpected changes in routine
• Difficulty understanding social cues and expectations
• Past negative experiences

Promoting control. Giving individuals with autism appropriate choices and control over their environment can significantly reduce anxiety and improve overall well-being. This might involve:

• Offering visual schedules to increase predictability
• Allowing for "escape" options in overwhelming situations
• Teaching self-advocacy skills
• Respecting personal preferences in sensory experiences

5. Emotional memories powerfully impact behavior and development

When we find a person's behavior baffling or inexplicable, it's often because the person standing right in front of us is caught up in a memory so intense and vivid that it's as if the events are happening all over again.

The power of emotional memory. People with autism often have intense emotional memories that can be triggered by seemingly unrelated stimuli. Understanding this can help explain sudden changes in behavior or unexpected reactions.

Strategies for addressing emotional memories:

• Identify triggers and work to create positive associations
• Use visual supports to explain past events and future expectations
• Provide reassurance and support during challenging situations
• Celebrate and reinforce positive experiences to build a reservoir of good memories

Creating new memories. Actively work to create positive experiences in various settings to help override negative associations and build confidence in navigating the world.

6. Social understanding develops differently in autism, requiring patience and support

We all function this way. If we have positive memories of people or places or activities, we're drawn to them. If we have negative, stress-filled memories, we avoid them, and just the thought of them can provoke uncomfortable feelings.

Social learning challenges. While most people intuitively pick up social rules and norms, individuals with autism often need explicit teaching and explanation of social expectations.

Strategies for supporting social development:

• Break down social rules into clear, concrete steps
• Use social stories or visual supports to explain situations
• Provide opportunities for structured social interactions
• Teach perspective-taking skills
• Focus on the individual's strengths and interests in social situations

Reframing social "mistakes". Instead of viewing social missteps as failures, see them as learning opportunities. Celebrate small successes and progress in social understanding.

7. Long-term development in autism is a journey of small steps and shifting perspectives

Raise your hand if you have ever been the primary reason your child or student experienced a full-blown meltdown.

Embracing the journey. Autism is a lifelong condition, but development continues throughout life. It's important to focus on progress rather than comparing to neurotypical milestones.

Key aspects of the long-term view:

• Celebrate small victories and incremental progress
• Adjust expectations and goals as the individual grows and changes
• Recognize that development may be uneven across different skill areas
• Stay open to new possibilities and unexpected strengths
• Build a support network for both the individual and their family

Shifting priorities. What seems critically important at one stage of development may become less so later. Be flexible in your approach and goals as the individual with autism grows and changes.

8. Parents and professionals who "get It" make the biggest difference

The people we valued most were the ones who never judged us, but joined us on the journey.

Qualities of those who "get It":

• Empathy and understanding
• Flexibility in approach
• Focus on building trust
• Ability to see the person beyond the diagnosis
• Willingness to learn from the individual and their family

Impact of supportive relationships. Having people who truly understand and support the individual with autism can dramatically improve outcomes and quality of life for both the person and their family.

Becoming an "It" person:

• Listen more than you speak
• Be patient and open-minded
• Focus on strengths and possibilities
• Respect the expertise of individuals with autism and their families
• Continuously educate yourself about autism and neurodiversity

9. Self-determination and happiness should be prioritized over academic achievement

In order to advance the mind, we must first energize the spirit.

Redefining success. While academic and skill development are important, the ultimate goal should be a fulfilling, self-determined life. This means focusing on:

• Building self-esteem and a positive self-image
• Developing communication skills for self-advocacy
• Fostering independence and decision-making abilities
• Nurturing interests and passions
• Creating opportunities for meaningful relationships and community involvement

The role of happiness. A focus on well-being and positive experiences can actually enhance learning and development. When individuals feel safe, respected, and engaged, they are more open to new challenges and growth.

Balancing goals: While it's important to have high expectations, it's equally crucial to ensure that the pursuit of skills or achievements doesn't come at the cost of emotional well-being and self-determination.

10. Disclosure of an autism diagnosis is a process, not a single event

I have never met a person with autism who felt that being told of the diagnosis—or becoming aware of it over time—was a negative or damaging experience.

Timing of disclosure. There's no one-size-fits-all approach to sharing an autism diagnosis. It often becomes relevant when:

• The individual starts noticing differences between themselves and peers
• Questions arise about why certain things are challenging
• Self-esteem issues emerge related to perceived differences
• There's a need to advocate for accommodations or support

Disclosure as a process:

1. Highlight individual strengths and abilities
2. Discuss challenges in a non-judgmental way
3. Introduce the concept of neurodiversity
4. Explain autism as one way of describing the individual's unique brain wiring

Benefits of disclosure:

• Increased self-understanding and self-acceptance
• Better ability to advocate for needs
• Access to appropriate support and accommodations
• Connection with the autistic community and role models

Ongoing conversation. Disclosure isn't a one-time event, but an ongoing dialogue that evolves as the individual grows and encounters new situations.

Last updated: December 14, 2024