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Real members of MyAutismTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How do you better advocate for yourself and child/adult child's needs?

A MyAutismTeam Member asked a question 💭

Just to be treated decently and to be communicated with or talk more with even nonverbal and to get attention when needed. To get better advised about communication. Even though I say talk to nonverbal son and they just hand food in silence to him or doing house chores in complete silence. How can staff at his Care Home get better with communication - advise

July 6
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Reactions
A MyAutismTeam Member

People should always follow the "golden rule" of presuming competence. Just because someone is not able to verbalize their thoughts, doesn't mean they aren't thinking them! Others should still talk to someone who is nonverbal the same way they'd talk to anyone else. This makes the person feel respected and like their opinions matter. There are many ways to communicate, and people who don't use words use many other forms! :)

July 9
A MyAutismTeam Member

Continuing education for staff and a treatment plan to be followed religiously. Daily/weekly/monthly check ins. Plans are living documents so when things change make sure the plan is updated.

August 1
A MyAutismTeam Member

Have you already talked to them? Sometimes it's better to do things in writing like email or mail if a conversation is not making a difference so it's formal and official. Will he wear headphones? If so maybe he could listen to a podcast or audio books to hear a voice.

July 6 (edited)
A MyAutismTeam Member

https://www.autismspeaks.org/advocacy

To advocate for autistic children, start by mastering your local special education laws and building collaborative relationships with school teams. Focus on documenting your child's specific needs, request accommodations like sensory breaks, and empower your child to self-advocate. You can step up your impact through the following steps:1. Advocate at SchoolMaintain Written Records: Always request services and evaluations in writing. Follow up verbal conversations with a quick email summarizing what was discussed.Participate in the IEP Process: Prepare for Individualized Education Program (IEP) meetings by gathering data, and never go alone—bring a trusted friend, family member, or professional advocate to take notes.Partner with Teachers: Approach conflicts with curiosity rather than accusation. Assume the team's goal is to help your child, and collaborate to identify workable accommodations (e.g., sensory toys, quiet spaces, or flexible deadlines).2. Learn Your Rights and Get TrainedUnderstand the Law: Familiarize yourself with the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act.Seek Formal Training: Organizations offer comprehensive training to become a certified special education advocate. Look into programs provided by the Council of Parent Attorneys and Advocates (COPAA), Wrightslaw, or local Parent Training and Information Centers (PTICs).3. Broaden Your ImpactEmpower Self-Advocates: Listen to autistic voices and prioritize the perspectives of neurodivergent individuals. Engage with organizations run by and for autistic individuals, such as the Autistic Self Advocacy Network.Influence Public Policy: Support local and federal legislation by joining advocacy networks. You can sign up for policy alerts and action campaigns through the Autism Society or Autism Speaks.

https://www.autismspeaks.org/advocacy
July 6
MyAutismTeam

Advocating for your son's right to be spoken to and engaged with — even as a nonverbal person — is so important, and you're absolutely right to push for this. Every person deserves to be talked to with warmth and respect, not just handed things in silence.

Here are some ways to advocate more effectively with care home Show Full Answer

Advocating for your son's right to be spoken to and engaged with — even as a nonverbal person — is so important, and you're absolutely right to push for this. Every person deserves to be talked to with warmth and respect, not just handed things in silence.

Here are some ways to advocate more effectively with care home staff:

- Be very direct and specific — instead of saying "talk to him more," try "when you give him his meal, please say his name, tell him what the food is, and ask if he likes it"
- Put requests in writing — a simple care communication plan that staff must follow gives your words more weight
- Use "I" statements — for example, "I need staff to verbally engage with my son during every interaction, not just complete tasks in silence"
- Request a formal meeting with the care home manager to make communication expectations part of his official care plan
- Ask for staff training on communicating with nonverbal individuals — this is a reasonable and legitimate request It can also help to share specific communication techniques with staff, so they feel more confident. For example:

- Narrate activities — staff can describe what they're doing ("I'm bringing your lunch now, it's pasta today!")
- Use simple, direct language — short, clear sentences work best
- Allow response time — nonverbal individuals may communicate through gestures, expressions, or sounds, so staff should pause and watch for these
- Acknowledge his responses — even a glance or a sound is communication worth recognising

As one MyAutismTeam member wisely said, *"Hope NEVER fades. Keep talking to him."* That applies to everyone around him too — including care staff.

You are not asking for too much. Consistent, warm communication is a basic human need, and your son deserves nothing less. Keep advocating firmly and specifically — it makes a real difference.

July 6

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