Real help: the numbers, the free path, and what to avoid
The short answer
- Need a person tonight? Call or text 988, or text HOME to 741741. (Both are for you as well as for them.) Tonight.
- Call the Autism Society helpline for what your state has: 1-800-328-8476.
- Get on your state's Medicaid waiver list this week. (It is the funding key for respite and adult support, and the wait is years.) The free path.
- Find your state's Parent Center. (Free, in every state, and they read the paperwork with you.)
- Apply for the free Big Red Safety Box if wandering is a risk. (Door alarms and an ID tag, one box per family.)
- Walk away from anyone selling a cure. (Chelation has killed a child. Bleach sold as "MMS" has put people in hospital, and some have died.) What to be careful of.
Almost all of this is free, and almost none of it is offered unless you ask for it by name.
Tonight, if you need a person
- 988 Suicide & Crisis Lifeline. Call or text 988 in the US, 24/7/365, with chat, Spanish text and chat, and a Deaf and hard of hearing option. 988lifeline.org
- Crisis Text Line. Text HOME to 741741. Confidential, with a trained volunteer crisis counsellor. Texting is easier than talking for a lot of people, autistic and not. crisistextline.org
- Autism Society National Helpline. 1-800-328-8476, or Info@AutismSociety.org. Trained information and referral specialists find what exists in your state and talk through next steps. Their page lists no hours, so leave a message or email if nobody answers. It is not a crisis line and does not provide direct services. Its local affiliates in many states know the local programmes. autismsociety.org/helpline
- National Autism Association: wandering and safety. NAA cites research that 49% of autistic children attempt to elope from a safe environment. Nearly one third of wandering incidents happen from a school setting. More than a third of children who wander are never or rarely able to give their name, address or phone number. Free tools include the Be REDy booklet, wandering quick tips and a personal emergency profile sheet. nationalautismassociation.org/resources/autism-safety
- The Big Red Safety Box. NAA calls it "a free-of-charge toolkit given to autism families in need". It contains two wireless door and window alarms, a personalised RoadID bracelet or shoe tag, stop sign visual prompts, a window cling and a child ID kit. One box per family, while supplies last, for a person diagnosed with autism who is at risk of wandering. nationalautismassociation.org/big-red-safety-box
- UK: National Autistic Society. Guidance for families, a Parent to Parent emotional support service staffed by trained parent volunteers, an Ask ASH signposting tool, a 24/7 online community and the Autism Services Directory. They do not run a crisis or emergency service. For a UK crisis: 999, or 111 then option 2, or Samaritans on 116 123, or text "shout" to 85258. autism.org.uk/help-and-support
The free path, in the order it usually works
- Early Intervention (IDEA Part C), birth through age 2. ED.gov: "Infants and toddlers, birth through age 2, with disabilities and their families receive early intervention services under IDEA Part C." You need no diagnosis or referral to ask for an evaluation, and the state does the evaluation. Search [your state] early intervention referral. sites.ed.gov/idea
- The school evaluation (IDEA Part B), ages 3 through 21. "Children and youth ages 3 through 21 receive special education and related services under IDEA Part B." Ask in writing, and keep the date and a copy. A written request starts a legal clock; a conversation in the corridor does not.
- Your state's Parent Training and Information Center. Nearly 100 Parent Centers serve families of children with disabilities from birth to age 26, funded by the US Department of Education's Office of Special Education Programs. They know your state's rules, they will read your IEP with you, and many are staffed by parents who have done this. parentcenterhub.org/find-your-center
- Family-to-Family Health Information Center. "Family-led organizations that support families of children and youth with special health care needs." They are funded in every state, DC, five territories and three organisations serving American Indians and Alaska Natives. Each one is "staffed by highly skilled, knowledgeable families with first-hand experience". Use them for insurance fights, Medicaid questions and finding specialists. familyvoices.org/f2fs
- Medicaid Home and Community-Based Services waivers. HCBS "provide opportunities for Medicaid beneficiaries to receive services in their own homes or communities rather than institutions". They fund respite, personal care, job coaching, day programmes and supported living, and can be reachable through the disability itself rather than your income. There is usually a waiting list, so get the name on it today. Search [your state] Medicaid waiver intellectual developmental disability waiting list, or start at your state developmental disability agency. medicaid.gov
- ARCH National Respite Locator. A searchable database of respite providers by state. ARCH says it is "for informational purposes only and is not all-inclusive", and that you are responsible for checking the experience, background checks and qualifications of anyone you hire. archrespite.org/respitelocator
- Sibshops, for the brothers and sisters. Run by the Sibling Support Project: peer support and information for school-age siblings of children with disabilities, in a lively recreational setting rather than a therapy room. Hundreds run across the US and abroad, and the project also runs online groups for adult siblings. siblingsupport.org: find a Sibshop
- 2-1-1. Dial 211 in the US for food, rent, utilities, transport and local help of any kind, when you do not know which agency you need.
- The library. Free books, internet and printing for the paperwork, and in many towns a sensory-friendly story hour or a quiet room. Ask the librarian what they have for autistic children and adults.
Money
- SSI (Supplemental Security Income). Monthly cash for people with disabilities and very limited income and resources. Before 18 a portion of the parents' income counts. From the month after the eighteenth birthday it does not, so many families refused earlier qualify at 18. The resource limit is $2,000 for an individual. ssa.gov/ssi
- Medicaid. In most states SSI approval brings Medicaid. If SSI is denied, ask your state about eligibility through the disability itself and about HCBS waivers. Medicaid, not private insurance, pays for most long-term autism support in adulthood.
- ABLE account. Savings that do not break benefits: up to $100,000 in an ABLE account is not a countable resource for SSI. In calendar year 2026 a total of $20,000 may be deposited from all sources. Since 1 January 2026, eligibility covers disability onset "before age 46" (it was "before age 26"). Anyone can contribute, including grandparents. ablenrc.org
- Two tax questions for a preparer, with your receipts. The child and dependent care credit is not only for children under 13. It covers care for "a disabled spouse or dependent of any age who is incapable of self-care and who lives with you for more than half of the year". The medical expense deduction covers qualifying medical expenses that "exceed 7.5% of your adjusted gross income for the year", and only if you itemise on Schedule A. irs.gov: topic 502
- FMLA, in one line. Eligible employees get "up to 12 workweeks" of unpaid, job-protected leave in a 12-month period, including to care for a child who is "age 18 or older and incapable of self-care because of a mental or physical disability". Eligibility has employer-size and tenure tests, so check rather than assume. dol.gov: FMLA
- Vocational Rehabilitation. Free, in every state, and it works with students before school ends: help to "prepare for and engage in competitive integrated employment or supported employment". rsa.ed.gov: state VR agencies
If it is just you
- Get on the waiver waiting list this week. (It turns into paid hands later, and it takes years.)
- Call your Parent Center and say you are on your own. (They know which local programmes take a single parent seriously.)
- Ask one church, one neighbour and one parent from school for one specific job each. (Small, named, repeating. People say yes to Saturday 9 to 10:30 and no to "help".)
- Find the online group for your exact situation. (Single parents of autistic children, adult siblings, partners. At 3am an online group is the only thing open.)
- Write the emergency page now. (One sheet on the fridge: who to call, the medicines, the routine, what frightens them, what settles them. If you are ever taken to hospital, that page is the plan.)
- Name a backup in writing, and tell them. (An imperfect named person beats an empty line.)
- Use 988 or Crisis Text Line for yourself.
What to be careful of
Autism attracts people selling cures, and some of what they sell has killed children.
Bleach, sold as "Miracle Mineral Solution" or MMS or CD. It is sodium chlorite and water, which becomes chlorine dioxide, an industrial bleach, when taken as directed. FDA has urged consumers not to buy or use it for any reason, saying that drinking MMS is the same as drinking bleach. Reported harms include severe vomiting and diarrhoea, life-threatening low blood pressure from dehydration, methemoglobinemia, dangerous heart-rhythm changes, hospitalisation and death. It is not approved for any use. It is still sold online for autism, including as an enema for children.
Chelation. Chelation drugs strip metals from the body, and are sold for autism on the theory that autism is metal poisoning. In August 2005 a 5 year old boy with autism died during intravenous chelation in a doctor's office, after being given the wrong EDTA drug. CDC's report on that death and two others says the two products' brand names were "used interchangeably". CDC says it "will continue to educate health-care providers and pharmacists to ensure that Na2EDTA is never administered to children during chelation therapy". A 2015 Cochrane review found no trial evidence that chelation helps autism, and said its risks outweigh any proven benefit.
"Leaky gut" and restrictive diets sold as cures. A diet that removes whole food groups from a child who already eats six foods can cause real deficiency. Ask a paediatrician or dietitian before removing anything, and ask what will be monitored.
Stem cell tourism. Clinics abroad and at home sell stem cell infusions for autism, at high cost, outside approved trials. If a treatment worked, it would be in a published trial and not in a payment plan.
The five questions that expose a sales pitch.
- Does it promise a cure, or recovery, or "losing the diagnosis"?
- Do they want money up front, or a package of sessions, or travel?
- Is there a published trial in a journal, with a control group, that someone other than the seller ran?
- Are the only proofs testimonials, before-and-after videos, and parents who are also selling it?
- What does your own doctor say when you show them the actual product name?
A directory listing, a certification or a five star rating is not a verdict. Directories usually list whoever paid or applied, and ratings measure paperwork better than kindness. Use a list to find names, then judge with your own eyes. Watch how the person speaks to your family member and not to you. Ask how long their staff have stayed. Ask what they do when a plan is not working, and ask for two families you can call. "Test all things. Hold fast to what is good" (1 Thessalonians 5:21, BSB).
Places to learn more that respect the person
- ASAN, the Autistic Self Advocacy Network. Run by autistic people. Plain language and easy read guides on Medicaid, voting, employment, housing and rights, plus Welcome to the Autistic Community! for people who are newly diagnosed. Read it to learn how your family member may see their own life. autisticadvocacy.org/resources
- AANE, the Association for Autism and Neurodiversity. Services for autistic adults, parents, and partners, including groups and coaching for neurodiverse couples and a support group for non-autistic partners. aane.org
- CDC: Living with Autism Spectrum Disorder. It says the transition from high school to adulthood "can be especially challenging" and that it is important to begin thinking about it in childhood. cdc.gov/autism/living-with
- NIMH: Autism Spectrum Disorder. The research agency's overview, including how to find mental health services. nimh.nih.gov
On books
We list no books yet. Some of the best known titles are disputed by autistic adults themselves. Ask in an autistic-led space which book they would hand a parent.
Church and faith community
Most churches want to help and do not know how, so ask for something specific.
- Key Ministry. Describes itself as serving "churches seeking to welcome individuals and families impacted by disability, mental health and trauma, for the purpose of making disciples of Jesus Christ". Free practical resources for churches, virtual roundtables, and coaching. Send this to your pastor. keyministry.org
- Joni and Friends. Family Retreats, Marriage Getaways, church training resources, and disability ministry worldwide. Their stated vision: "a world where every person with a disability finds hope, dignity, and their place in the body of Christ". joniandfriends.org
What to ask your own church for. "Can you help?" gets sympathy. A named job gets a yes.
- One trained buddy who sits with your child in the service, the same person each week.
- A quiet room with the sound piped in, so you can stay when the sanctuary is too much.
- Permission for headphones, fidgets, and leaving in the middle without anyone commenting.
- Two people to cover ninety minutes a week so you can sleep, shop or be alone.Could two people take him for ninety minutes on Saturday mornings so I can sleep?
- Communion and baptism questions answered plainly for a person who does not speak.
- Someone who keeps visiting after the first month, when the casseroles stop.
"Carry one another's burdens, and in this way you will fulfill the law of Christ." (Galatians 6:2, Berean Standard Bible, biblehub.com/bsb/galatians/6.) Carrying looks like ninety minutes on a Saturday, repeated.
Verified September 2026 against 988lifeline.org, Crisis Text Line, the Autism Society and the National Autism Association. Also the National Autistic Society (UK), ED.gov, parentcenterhub.org, Family Voices, Medicaid.gov, ARCH respite and the Sibling Support Project. Also the ABLE National Resource Center, IRS.gov, DOL.gov and RSA.ed.gov. Also FDA statements on Miracle Mineral Solution, CDC's MMWR report on deaths from chelation, ASAN, AANE, CDC, NIMH, Key Ministry and Joni and Friends. Sources on the sources page. Background for a caregiver, not medical, legal or financial advice.