We’ve rounded up our best tips, education and other resources to help you on your journey with a child with autism. Have a question not covered here? We are always here to help!
Signs of autism
Children with autism spectrum disorder often have common patterns of behavior. The symptoms or signs of autism can be seen as early as 12 months in some babies, but typically start to present around 18 to 24 months. You can use the CDC’s Milestone Tracker app or fill out a milestone checklist to track your child’s development.
If your child shows delays in cognitive, language and/or social skills, you may want to speak to your pediatrician. Some milestones to watch for are:
- Smiling by six months
- Imitating facial expressions and sounds by nine months
- Cooing and babbling by 12 months
- Gesturing (pointing or waving) by 14 months
- Speaking with single words by 16 months and using phrases of two words or more by 24 months
- Playing pretend by 18 months
If your child loses any of these skills at any age it is recommended that you make an appointment with your doctor for an evaluation.
For even more information, you can read the American Psychiatric Association’s DSM-5 (Diagnostic and Statistical Manual of Mental Disorders – 5th edition) diagnostic criteria.
My child has been diagnosed with autism. Now what?
Learning that your child has autism brings a whirlwind of emotions. Feeling overwhelmed and panicked over not knowing where to begin is extremely common. The good news is that you’ve already found Autism F.I.R.S.T.! We are here to guide you every step of the way.
You may also find this “First 100 Days” kit from Autism Speaks helpful. It’s a tool kit to support families in getting critical information in the first 100 days after an autism diagnosis.
100 Day Kit for Young Children:
100 Day Kit for School Age Children:
What is early intervention?
Early intervention is the term used to describe any assistance your child aged 0-3 can receive from your state to begin to address any developmental delays. Research has proven that earlier is most definitely better. Your child’s brain is growing and developing at an incredibly high speed from birth to age three. Getting timely therapy for your child can make a big impact.
To learn about Virginia’s early intervention program, you can speak with your Autism F.I.R.S.T. advocate as well as visit www.itcva.online.
These reputable websites offer further information on autism:
What is an advocate?
Whether you are working through a new autism diagnosis or you’ve been in the trenches for many years, having a child with autism can be overwhelming to say the least. There are so many complex systems, resources and paths to navigate that many parents have no idea where to begin or even what questions to ask.
An advocate will help you navigate the complex systems you’ll encounter, direct you to resources and work with you to find the right solutions for your family. Connecting with a strong advocate could be the path to success for your child, not to mention help keep you, the caregiver, sane. To learn more, visit our advocacy page.
How to better advocate on behalf of your child
Getting your child an Individualized Education Plan (IEP) or other services can be a confusing and detailed process. Did you know there could be up to 20 people in one IEP meeting!?
Your Autism F.I.R.S.T. advocate will help you navigate each system and process and be by your side every step of the way. To further educate and prepare yourself on how to advocate for your child, we have compiled this list of resources:
- Center for Parent Information and Resources
A detailed guide on how to prepare for your first IEP meeting.
- How to Compromise with Your School District Without Compromising Your Child: A Field Guide for Getting Effective Services for Children with Special Needs
A book that has been described as a must-have guide for parents to help their child with autism get the fair and appropriate education they need and deserve.
- Parent Educational Advocacy Training Center
This organization has the goal of building positive futures for Virginia’s children by working collaboratively with families, schools and communities.
An incredibly informative website that provides free access to articles, cases, resources and training on special education law and advocacy for children with disabilities.
- The Arc of Virginia
This statewide advocacy organization is made up of people with developmental disabilities, their family members and their allies who help them to fight for “A Life Like Yours.”
- Council of Parent Attorneys and Advocates
An organization with the mission to protect the legal and civil rights of students with disabilities and their families.
Family and Caregiver support
A child with autism impacts the entire family. In particular, it can be really challenging for siblings when parents have to spend so much time and energy on their brother or sister.
Here are some of our top tips to support siblings of children with autism:
- Spend alone time with your child whenever you get the chance.
- Find ways for your child to feel like a partner in the care of their sibling.
- Validate your child’s emotions of frustration, jealousy and anger.
- Encourage activities and friendships outside the home.
- Find a sibling support group so they know they are not alone.
Autism F.I.R.S.T. offers individual and group therapy for the siblings of children with autism which helps them gain skills to increase understanding and form a stronger relationship.
We love these podcasts that focus on parenting techniques and research. Have a podcast you love? We’d love to listen! Contact us!
The Autism Helper
Host Sasha Long, BCBA explores different strategies to improve the lives of individuals with autism. Check out episode 156 where she interviews Temple Grandin.
Autism Science Foundation Weekly Science Report
A summary of the latest research in autism spectrum disorders. The hosts discuss new science, research discoveries, meetings and discussions, news reports and other information important to those affected by autism, especially families.
Autism Parenting Secrets
hosts Len and Cass Arcuri, parents of a son with autism, share their experiences and teach you how you can rise up and become the parent you need to be.
Sometimes knowing you are not alone on your journey with a child with autism can make all the difference in the world. To be able to learn “tricks of the trade” or just have someone to talk to who understands what you are going through can really get you through a rough week.
Autism F.I.R.S.T. runs a monthly, adults-only support group that is open to the public. Family F.I.R.S.T. Fridays occur on the first Friday of each month and provide a wonderful opportunity to meet other caregivers, share experiences and participate in a discussion on a variety of topics surrounding life with an autistic child. To RSVP and to see our other events, visit www.autismfirstus.com/events.
There are many online support groups you can access as well. Here are a few to explore:
Loudoun County, VA
Fairfax County, VA
Chuck E. Cheese – Special sensory-friendly hours the first Sunday of every month.
Regal Cinemas – Twice-monthly movies where the lights are up and the volume is down.
Kennedy Center – Family performances that are a welcoming and comfortable arts experience for people with autism or other disabilities.
Smithsonian Museums – Visit a museum before it opens to the public on specific Saturday and Sunday mornings.
iFLY Loudoun – All-abilities night of indoor skydiving for people with physical or cognitive disabilities.
National Aquarium – Enter 30 minutes before the Aquarium opens on the first Saturday and the first Sunday of each month for a leisurely, crowd-free visit.
Coping with meltdowns
A meltdown from a child with autism can leave you exhausted, scared and wondering if you handled it correctly. While there are no formulas, our therapists engage in a few key techniques to help weather the storm.
- Safety first – Precautions might include holding tightly to the child, taking them to a controlled environment or just leaving them alone. If you are in public, you may consider explaining to bystanders that your child has autism and to please step back so they can calm down.
- Create a calming routine – This could involve visuals, music or a weighted blanket. Make a sensory toolkit you take with you for when you are in public.
- Don’t be logical – Even highly-verbal children with autism have a hard time understanding and cannot be reasoned with during a meltdown. Try not speaking at all. When you do speak, keep it short, clear and use visual signals.
- Stay calm – If you panic you can add stress and escalate the situation. Try and take a breath and know that the meltdown will eventually end.
- Be there – Simply being present and showing your child you are there to help is sometimes the very best thing you can do.
Back to school tips
When you have a child on the spectrum, switching from summer fun to school days can be an even bigger adjustment than for other kids. Here are some tips to help you smooth the transition.
- Gradually adjust wake up time – If your child has been sleeping in or getting up at erratic times in the summer, start waking up earlier bit by bit. When school starts you want to have plenty of time for your child to complete their morning routine each day.
- Set expectations – Talk daily about what to expect when school starts, and create an example schedule of what will happen on a typical day.
- Cross off days on a calendar – Start Xing off the days before school starts so your child can visually see how many days are left of summer.
- Get a tour – If your child will be attending a new school, see if you can set up a tour. Bonus: meet the teacher! If that’s not possible, be sure to write a letter to send on the first day outlining important information you think he or she needs to know about your child.
- Pick out clothing and shoes – Have your child help select first-week outfits in advance. You can even do a practice run in them for a few hours to make sure they are extra comfortable.
We love National Autism Resources’ extensive catalog of toys and tools for children with autism for use at home and in the classroom or therapy environment. Visit www.nationalautismresources.com
Financial planning for children with disabilities
Caring for a child with autism is already incredibly overwhelming. Add in thinking about their future, and it can send you over the edge!
Creating a financial plan for your child’s future will include things like:
- Creating a special needs trust and naming a trustee
- Setting up an ABLE account (a tax advantaged savings account)
- Writing a will
- Naming a guardian
Of course your Autism F.I.R.S.T. advocate can offer guidance, and you may consider hiring a special needs financial planner. Autism Speaks has also put together this comprehensive tool kit with essential information to develop a financial plan for your child’s future: Autism Speaks Financial Planning Tool Kit.
Be Prepared in an Emergency
In the event of an emergency, police, EMTs, firefighters and other first responders may not have had training in the signs, symptoms and special handling of people with an ASD or other cognitive disability. Because of this, parents need to proactively prepare for emergencies.
We highly recommend creating your free online health profile at www.emergencyprofile.org so that important, life-saving information can be sent to 911 in an emergency.
For more tips on how to prepare for an emergency, Autism Speaks has created the Autism Safety Project.