Dealing with the Impact of an Autism Diagnosis - dummies

Dealing with the Impact of an Autism Diagnosis

By Stephen Shore, Linda G. Rastelli, Temple Grandin

Finding out your child has autism is very difficult. No one can tell you that the road ahead will be easy. You may have to rewrite the script of your child’s life (and your own). You have a whole new set of issues, pressures, and decisions to deal with now. And people around you may not understand or appreciate the depth of what you’re going through.

Important first steps include allowing yourself to process the diagnosis and then motivating yourself to take action. Early intervention is vital because the brain has its greatest plasticity during the early stages of the disorder’s development.

Coming to terms with an autism diagnosis

Some parents describe learning that their child is autistic as a kind of death. “It felt like a death sentence — all our hopes and dreams about his future changed in a day,” remembers one mother (who has since been named “Autism Parent of the Year”).

And although a verdict of death for your child, yourself, or anyone’s education is a big stretch, a diagnosis of autism does change your family’s life. It requires a period of bereavement and the acknowledgement that life will never be the same. Finding out you have a disability or that you have to parent a child with one is a life-changing, momentous event, and you need to work through it.

You’re not weak if you seek out help to deal with the emotional impact, nor should you feel guilty about the various negative emotions you experience during the process. It’s normal to feel angry, sad, or hopeless at first. However, you don’t want to allow this to paralyze you. If your emotions interfere with your ability to function or to help your child, you need more support. You shouldn’t try to go it alone.

Parent support groups are godsends for the people who belong to them. Your peers in the group may not have answers for your child’s situation, but they’re going through similar struggles and they’ll listen and offer feedback. Even if you don’t consider yourself a “joiner,” going to only one meeting may convince you that a support group is a worthwhile investment of your time.

Taking action for your autistic child

Autism isn’t curable, but an approach or collection of approaches can lessen the more severe effects of the disorder, allowing a person on the autism spectrum and his or her family to lead a fulfilling and productive life.

Because of the great diversity in the autism spectrum, each child has different needs. You need to take steps immediately to determine which intervention(s) works best for your child and locate persons who can provide that intervention such as an allergist, an immunologist, a gastroenterologist, or a nutritionist. And because your child’s needs tend to change over time, you need to constantly monitor his or her progress and work closely with your doctors.

Avoiding autism-related scams

After an autism spectrum disorder diagnosis, parents and other family members are often in shock and denial about their child’s condition. This mindset puts you in an extremely vulnerable position. In this state, you very well may be willing to do whatever it takes to “cure” your child’s autism. You’re frantically looking for help, which means you’re susceptible to accept it from people who don’t have your child’s best interests at heart.

You need to be aware of hoaxes; false, deceptive, and/or misleading advertising; and promises that a particular treatment is “the cure.” Of course, parents naturally want to explore all the possibilities. But if a treatment seems too good to be true, it probably is. If a treatment seems too far out, it probably is. If a doctor seems too expensive, she probably is.

Here are some helpful hints to avoid the scam artists and avoid being taken advantage of:

  • Don’t just spend whatever it takes. Just because you’re willing to spend the money doesn’t mean your child will get better. Be prepared to spend money, but spend wisely. Bankrupting your family won’t help your child.

    This advice goes for seeking medical help as well. Paying exorbitant charges or fees for services isn’t the norm among respectable healthcare professionals’ practices. Stay away from providers who double or even triple charge for what an office visit or test would cost!

  • Doctor shop. Look around for medical professionals; you don’t have to go with the first one you meet. Ask your primary care physician for multiple referrals or recommendations during the diagnostic process. Interviewing healthcare providers is an excellent way to get a feel about how they run their practices.

  • Seriously consider the ramifications of uprooting your family just to get the desired professional help in another city or state. Some treatments require travel, but try to find comparable treatment close to home whenever possible.

  • Don’t let anyone guilt you into a treatment. You should be battling the autism disorder, not any people butting in to lend their two cents.

  • Don’t be humiliated or shamed into thinking that you owe a particular treatment to your child. With help and feedback from doctors and your child, it’s up to you to know what’s best for his or her treatment.

Watch out for anyone who claims to be “an expert in the biology of autism,” anyone who charges exorbitant fees (including doctors!), and anyone who says that he or she has the cure for autism. To date, there is no known absolute cure. You must rely on treatments that can lead to the reduction of autistic behaviors and toward recovery.