NuroLux 2022 Parent Survey

1. Why We're Asking For Your Help

Thank you for advocating for your loved one(s) with Autism by completing this survey. NuroLux is a movement created by parents and professionals eager to fix the fractured landscape of Autism care. To best serve you and the thousands of other exhausted families navigating the countless financial, education and behavioral hurdles we face daily, we want to learn from you.

How Your Responses Will Be Used

Your responses will be used to (1) shape important conversations to help professionals using outdated or ineffective resources improve the value they provide to your family; (2) forge the foundation for new strategies to help you find accurate and actionable information to support your family during these trying times and (3) inform the solutions we build with community partners to improve the quality of life for everyone impacted by Autism.

Instructions

We anticipate the survey will take around 15 minutes. If there is any confusion in the wording of the questions, please focus your responses on highlighting the most challenging problems we can help you solve.

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* 1. Please let us know what part of the world you're in.

City/Town *

State/Province *

ZIP/Postal Code *

Country *

Email Address

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* 2. Please list the current age(s) in years of your child(ren) diagnosed with Autism.

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* 3. Please mark the current support services you are receiving for your child(ren) with Autism/ASD (Check all that apply).

Applied Behavioral Analysis (ABA)

1:1 Aide in school

Counseling in school

Psychotherapy in the community

Medication

Physical Therapy

Occupational Therapy

Speech

Social Skills Group

None of the above

Other (please specify)

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* 4. Overall, in your journey supporting your child(ren) impacted by Autism/ASD, has someone accurately outlined the service obstacles and expectations ahead, so you were able to plan accordingly?

Not at all, I was constantly surprised about the challenges every step of the way.

Mostly not, I wish someone would have shared the challenges I may face.

Mostly, I generally had an idea of what to expect supporting my child.

Kind of, I had someone share some of the challenges ahead.

Definitely, my expectations have been thoroughly managed every step of the way.

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* 5. Please describe the greatest challenges you believe are obstructing progress for your child(ren) diagnosed with Autism/ASD.

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* 6. Please describe the greatest challenges for YOU, as a caregiver, in supporting your child(ren) with Autism/ASD.

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* 7. Please describe what you believe are the MOST effective resources or services you are currently using, or have used, to support your child(ren) with Autism/ASD.

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* 8. Please describe what you believe to be the LEAST effective resources or services you are, or were, using to support your child(ren) with Autism/ASD?

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* 9. Please describe the resources you wish were available to support your family or your child(ren) with Autism/ASD.

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* 10. Please identify the type of school your child with Autism/ASD is enrolled in.

Public (in person)

Public (remote)

Public (hybrid, remote and in-person)

Private (in person)

Private (remote)

Private (hybrid, remote and in-person)

Home Instruction

Other (please specify)

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* 11. My child has the following academic support in school (check all that apply).

Special Education

Special Education/ General Education

General Education

Individualized Education Plan (IEP)

504 (Academic Accommodation Plan)

Truncated Day

Other (please specify)

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* 12. Who do you turn to for questions about the support and services your child(ren) with Autism receives? (Teacher, Pediatrician, Google, Friends, etc.)

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* 13. How satisfied are you with the resources currently provided to your child(ren) with Autism/ASD by his/her school?

Very dissatisfied

Dissatisfied

Neither satisfied nor dissatisfied

Satisfied

Very satisfied

Other (please specify)

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* 14. How confident are you in understanding all the services or resources your school district COULD offer your child with Autism/ASD?

Not at all confident

Somewhat confident

Neither confident or not confident.

Very confident

Extremely confident

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* 15. How confident are you that your child's current IEP/504 plan is benefiting them, or could benefit them?

Not at all confident

Not so confident

Somewhat confident

Very confident

Extremely confident

No current plan

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* 16. How much do you believe your child(ren)’s social skills have regressed during COVID-19 closures?

Extreme regression

Definite regression

Possible regression

No regression

Other (please specify)

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* 17. How much do you believe your child(ren)’s learning/education has regressed during COVID-19 closures?

Extreme regression

Definite regression

Possible regression

No regression

Other (please specify)

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* 18. Who is your current insurance provider? (Entity name only please)

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* 19. How satisfied are you in being able to understand what services are covered under your current insurance plan?

Very dissatisfied

Dissatisfied

Neither satisfied nor dissatisfied

Satisfied

Very satisfied

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* 20. Please identify all services or resources you are paying for out of pocket to support your child(ren) with Autism/ASD.

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* 21. Please estimate how much you spend out of pocket monthly for services or resources to support your child(ren) with Autism/ASD.

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* 22. How satisfied are you with your child(ren)'s ability to make new friends?

I'm very concerned.

They struggle, I'm somewhat concerned.

Neutral

It's a mixed bag, sometimes they're social, other times it's challenging.

Very satisfied, they're a social butterfly.

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* 23. Please rate your confidence that your child(ren) will be able to live independently as an adult.

Not at all confident

Somewhat confident

Neutral

Very confident

Extremely confident

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* 24. Please identify your current marital status.

Married

Divorced

Separated

Single

Widowed

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* 25. Please rate how your child(ren)’s autism has impacted your marriage or relationship with your significant other.

It has significantly hurt my relationship

It has hurt my relationship to some degree

It has not impacted my relationship

It has somewhat helped my relationship

It has significantly helped my relationship

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* 26. What could you pay out of pocket monthly for a trusted team of professionals to help you build and navigate a comprehensive care plan considering all components of effective Autism/ASD care (i.e. insurance/financial, education/school, out of school resources, community opportunities, etc.)

Nothing

Under $50

$50-100

$100-150

$150-200

More than $200

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* 27. What could you pay out of pocket monthly to participate in a virtual community of other caregivers that share questions, strategies and advice?

Nothing

Under $50

$50-100

$100-150

$150-200

More than $200

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* 28. What could you pay out of pocket monthly for resources to help you identify, nurture and develop your child(ren)’s strengths for purposes of eventually exploring his/her passions and employment options.

Nothing

Under $50

$50-100

$100-150

$150-200

More than $200

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* 29. Which of the following non-traditional Autism/ASD services are you interested in learning more about?

Equine Assisted Therapy and Riding: individuals are paired with horses and trained professionals to assist in developing social and behavioral skills.

Music Therapy: credentialed therapists use clinical and evidence-based music approaches to help child develop life, social and behavioral skills.

Inclusive Fitness Classes: professional trainers teach a child fitness practices in a safe environment.

Computer Programming Courses: experts help identify applying your child's gifts to coding, web and app design, gaming etc.

Hiring Programs for young adults with Autism/ASD: experts help your child identify and prepare them for employment opportunities.

Other (please specify)

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* 30. Please rank the topics in the order in which they would be most helpful to your current needs to better support your child(ren) with Autism/ASD from 1 (most interested) to 10 (least interested):