The Autism Advocate

Practical tips and musings on raising children and teens with autism

Parents New to Autism: More First Steps to Take

Lots to do: Research options, take care of yourself, get on waiting lists.

Being a parent of a newly diagnosed child with autism means you have lots of research to do to find out what kind of help is there for you and your child. In the previous blogpost, I discussed getting connected to local support groups, finding out about insurance coverage you may have, and learning about services or funding that may be eligible in your area.

Here are some more tips for new parents:

Get on waiting lists. If your child is very young, you need to find out about early intervention in your area. For any age, it is important that you get your name on any lists for services you feel you may need to access at some point. Who knows what the future holds? You may need speech evaluations, respite care, an assessment of special education needs, or other services. If you are investigating applied behavior analysis (ABA), it’s best to call a few providers and get on their lists. You may not want or need it in the end, but remember, it is easier to get off a list than to get a service when you haven’t been on one in the first place.

Start keeping good records. Start keeping a record  of all medical visits and  professional appointments. Keep track of telephone  conversations as well. Filing papers in a three-ring  binder in chronological order is the best way to organize information. Do not separate  papers  by profession (e.g., speech assessment, psychological assessment), as a chronological order of all papers makes it easier to see a complete picture of the child at different ages.

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Search for a mental health professional near you.

Start keeping notes on your child. Make a journal about your child and start collecting data and  making notes about developmental milestones, illnesses, bowel movement patterns, as well as health changes (if any) following vaccines, medications, and vitamins. Information recorded here about dietary habits; behaviors, including self-stimulatory ones; and the child’s abilities and challenges can be useful in getting a full picture of your child and can help in identifying the best ways to help him.

Videotape your child. Our memories may fade, but videos don’t lie. This is a good way of seeing how a child develops and progresses. Also, if ever you need to prove a point on how a particular method is working, a video can illustrate  that and make a strong visual impression about the difference in your child.

Do whatever you can to interact with and teach your child. You may be waiting on lists for some time. Do what you can to connect with your child: read to him, sing to him, play with him. Don’t wait for someone else to do it. Your child may not appear to be listening or paying attention, but they are. Connecting with this child may not be the same as connecting with his siblings (if any), but you will connect. Expose your child to educational TV shows such as Sesame Street. Many children have expressed they learned to read by watching Sesame Street and listening to mom or dad read to them.

Take care of yourself. Most importantly, do what you can to stay healthy and in a positive frame of mind. Keep in mind that often parents who receive a diagnosis for their child go through the stages of grief, much like a person who has lost a loved one. These stages of grief  and their negative and positive impact are discussed in Autism Spectrum Disorder. While this is going on, it’s important to remember that you still have a life outside this child. Take time for yourself and for your partner as well as any other children you may have. There is a whole world  out there, and you need to recharge your batteries to keep things in perspective.

Seek out positive people. Stay away from negative people who sap your energy. Sometimes, in support groups you will meet individuals who are constantly depressed  or you may have relatives  who are handling the diagnosis worse than you are. Everyone is entitled to a bad day here and there where they feel as if they have hit rock bottom. However, the whole point of having a good cry is to get it out of your system, and then get on with your day. You need to save your energy to help your child, your own family, and yourself; don’t let others drain it from you.

Read accounts written by parents of children with an ASD. There are many blogs and books written by parents of children with autism, and adults on the spectrum. These can be very informative. Keep in mind that they have their own viewpoint and perspective depending on what their experience has been, and where they ar their children fall on the spectrum. I've listed helpful books in the resources section of Autism Spectrum Disorder. There are movies as well that can help you have greater insight on people with varying degrees of autism, such as Autism is a World and Temple Grandin.

Keep in mind that you are not alone. There are many who have walked this path before, and we can learn from each other. The reality is, if you are accepting of the belief that life can be good even with autism, then your child will think so, too. You are the most important person in your child’s life, and you can make them believe that anything is possible.

Chantal Sicile-Kira is an advocate, award-winning author, and speaker known for her practical advice related to autism. Her latest book is A Full Life With Autism.

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