1. Newsletter
Signing up asks for your email, and optionally your name. About one email a month, with policy and practice updates and links back to free guides on this site. Every message includes an unsubscribe link.
2. Optional: introductions to organizations
A separate checkbox on the newsletter form, on by choice — the newsletter itself never requires it. If you tick it, we may use your email, name, and state (if you share them) so a partner can reach out — for example a national autism or disability rights group, or a state-level family support organization. We do not sell contact lists, and partners must not treat this as a paid lead list. This is not a referral for medical care, special education placement, or legal representation — only an optional introduction path. You can withdraw this consent at any time by emailing us; the newsletter itself can stay on.
3. Genetic testing connection form
A separate, one-purpose form on the genetic testing article and on state and city pages — not part of the newsletter signup. We use your email and phone number, and, if you provide it, your name. We also automatically include the state — and city, on city pages — from the page you submitted the form on, so a local or national genetics or testing partner serving your area can reach out about whole exome sequencing (WES) by email or phone. No lab or testing partner is named yet; submitting registers interest, it is not a referral to a specific provider, and it is not medical advice or a diagnosis. We do not sell contact lists. You can withdraw this consent at any time by emailing us.
4. Sharing a story, or commenting on one
Submitting a story or posting a comment asks for your name and email — no account, no password. Stories and comments are handled differently, though: a moderator reads every submitted story before it goes live, and only approved stories appear on the site. Comments are not queued for review — they appear as soon as you post them, checked only by automated spam protections (a hidden honeypot field and a rate limit), not a person. If a comment is inappropriate, or you'd like anything removed, email us and we'll take it down.
By default, both forms post anonymously: your name is shown as "A parent" and your email is never published. You can opt out of that and show your name instead. Either way, your email is used to confirm moderation decisions on a submitted story and to notify you when someone comments on it — and, only if you also check the separate "email updates" box on the story form, to send you occasional ActNowASD updates (a separate marketing list from section 1's newsletter, but the same kind of email, with the same unsubscribe option). Your email is never shown publicly and never sold.
A story can include up to four photos. Before we store them, we strip location and device information (EXIF/GPS metadata) that cameras and phones embed in image files. Uploading a photo is also checked against a separate record of hashed IP addresses, just enough to cap how many photos one connection can upload per hour: once a record is more than an hour old, the next photo upload from anyone clears it out.
Submitting a story or posting a comment additionally stores a hashed — not plain-text — version of your IP address as part of that story or comment record itself, alongside the name and email you entered, to help us detect spam; unlike the upload record above, it's kept for as long as the story or comment is. It's never published or shown to anyone browsing the site.
You can ask us to remove a story or comment, or to stop further comment notifications, at any time by emailing us.
Privacy in short
- Email is required for the newsletter. The genetic-testing form requires an email and a phone number, because a partner works those requests by getting in touch. Nothing else is required to read this site.
- Name and state are optional on the newsletter form; state helps match local organizations if you opt in.
- The genetic-testing form automatically includes the state (and city, on city pages) from the page you submitted it on — that one isn't a user choice, unlike the newsletter's optional state field.
- We keep a record of which consents you gave and when.
- Site content stays free without an account. Signing up for anything here is always optional.
- Sharing a story or commenting requires a name and email, but posts anonymously by default; your email is never published either way.
- Stories are reviewed by a moderator before they go live; comments are not — they publish immediately and are only checked by automated spam protections.
- Checking the story form's separate "email updates" box adds you to its own marketing list, distinct from the newsletter in section 1.
Questions, or to withdraw consent
Email hello@actnowasd.com.
Last updated July 2026.