5 Tips for Parents New to the World of Autism

5 tips for parents

new to the world of autism spectrum disorder

        So, you just got a diagnosis. Bittersweet, isn’t it? Sweet, because you now have a rational explanation for your child’s unusual behaviors. Yet autism is such a bitter pill to swallow. Questions fill your mind; where do we go from here? What does our child’s future look like? What does this entail in regards to our own future? We’ve all asked these same questions at some time or another. You are not alone.

The biggest question I think we all ask ourselves is “will my child ever grow to be independent?” While some individuals may remain dependent on others for their entire lifetime, especially those who are non-verbal and unable to care for their own basic needs, other individuals on the spectrum may become semi-independent, living in group homes or housing for individuals with special needs. Some might even become completely independent, living and working within society as a wholly-functioning adult.

        As your child grows, matures and receives the therapies and assistance he or she needs, you will most likely discover that your child is able to cope better with life in general and the amount of time you invest in your child’s day to day needs lessens with time. Education, maturity and time often work wonders. So keep your chin up. It won’t always be this hard.

Here are five tips I want to share with you.

1.   Buckle up, it’s a roller-coaster ride.

There will be good days and there will be bad days. Some days you’ll wish you could get off this ride. Hang in there, don’t let your emotions get the upper hand. Just remember, there are others who have walked in your shoes and can testify to dark stages in their own lives, periods when there seemed to be no hope in sight. But with time and training, those meltdowns become less frequent, you learn what helps and what to avoid (i.e.: never take your child to the store), you acquire techniques and skills that enable you to enjoy more good days than bad and life becomes a little more settled.

2.   Get a formal diagnosis.

I’ve known parents who were in great need of assistance, but without a formal diagnosis, their hands were tied. Make an appointment with your child’s pediatrician. Request a referral to a neuro-psychologist for an evaluation. Once your child has that formal diagnosis, doors will open that you never knew existed. Be persistent. I had to push, prod and persist with our own pediatrician, but it was well worth it.

3.   You are your child’s advocate.

No one else is going to fight for your child as well as you. As the parent, you must assume responsibility to make those calls, follow-up with doctors, ask questions and fight for your child’s rights. It may sound a bit pushy, but yes, that’s what is sometimes required if you truly want to obtain the services he or she needs. Doctors are busy, schools have hundreds of children, counselors are overbooked and therapists have waiting lists. So who’s going to advocate for your child? You. That’s right. The ball is always in your court.

4.   Request a case worker.

Once you have a formal diagnosis, you should be assigned a case worker. If not, request one. This case worker will meet with you and your child (often in your own home), do an initial assessment and establish what sort of care your child requires and what services he or she is eligible to receive. The case worker will also advocate for you and your child, if needed. Our case worker has been such a help, finding a plethora of valuable information when we sent him requests, helping us set up various services and just listening when we needed someone to talk to.

5.   Join an autism support group.

There are plenty of well-meaning people around you who will give you dire predictions, say words that are just plain hurtful and offer counsel you really don’t need or want. Only those who have a child with autism or are licensed to work with children on the autism spectrum can truly offer the guidance and support you need. An autism support group is a great way to discover what issues other parents struggle with, what they have found helpful and what keeps them going. You will discover you are not alone, and a helping hand is just a phone call away.

I trust these five tips have been helpful to you. For more information on autism services in your area, go to www.autismspeaks.org.

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