Telling parents their child may have Autism or Aspergers syndrome


by Gary J. Heffner

I have been privileged to receive emails from many concerned family members, family friends, and professionals who have observed the behavior of a child they suspect may have autism. The problem they are faced with is that either they do not know how to tell the family of the child of their concerns or they have already attempted to tell the family and the information was not received well.


A guideline for this difficult task

I responded to each and every one of these concerned individuals and attempted to share words of comfort and help. In many cases I joined them in prayer for the situation. After reviewing 56 pages of emails I have sent out over the years, I have decided to put this information in the form of a general template to deal with this specific frequently asked question: How do I tell someone their child may have autism? Here goes:


Dear Concerned,

This is a tough situation. There are trained physicians who will ignore or overlook the signs of autism just so they do not have to confront the parents with uncomfortable news. The thought that there is something wrong with a child can be devastating news to a parent. However, I have always believed that it is better to be faced with the truth and to handle it than to not know the truth. This is what I would suggest.


First, do your research. In general, a child with autism would have severe difficulty in social interaction (the child may prefer to be alone, may not look where you look, may not point to things, may not look you in the eye, may not show emotions appropriately, may hurt others without knowing it), severe difficulty communicating (the child may not talk, language may be delayed, may not use gestures or understand gestures or speech, may not be able to converse, may repeat words or phrases, may not imitate others), and would have some repetitive behavior and stereotyped behavior or interests (the child may only want to play with a few toys or odd items, may line toys up, may have strict "rules" about dressing or doing other things, may get upset at changes in routine or schedule, may make repetitive movements with hands or other parts of the body, may focus on a small part of a toy or activity). In addition, a child with autism may be sensitive to certain sounds or textures or other sensations. To obtain a checklist or description of the symptoms of autism, visit the following web sites:


Print out the checklist or description and make sure the child has the symptoms of autism. Once you have the symptoms checked off on a checklist, bring this and a short summary of autism to share with the parents (Dr. Edelson's Overview of autism is great).


Talk it over with them in a very gentle way (bring any supportive relatives you can find). I stress: gentle. This is devastating news; comparable to telling them that their child has died! Telling a parent you suspect their child has autism is like telling them: "your child will always need your help", "your child will be in an institution", "your child will never have a job", "your child will never go to college", "your child will never marry", etc. None of these are necessarily true, but they are the fears that parents have about autism and other disorders. So be gentle.


Prepare an action plan

After presenting the news to the family, be prepared to share an action plan for getting a diagnosis. Make sure you tell the family that these are just your concerns and you are not sure that the child has autism - a professional (usually a psychiatrist, neurologist, other medical doctor, or psychologist) must diagnose autism. If you know of other children with autism in your community, ask the family who diagnosed the child and give the name of this professional to the family you know. Other sources for diagnosis include your local Early Intervention Program, local hospitals, and your local Mental Health Center.


The parents know their child is smart - that does not rule out autism, Asperger's syndrome or another developmental disorder. Children on the autism spectrum are often smart, but the behaviors and sensory problems may get in the way. All children with autism will be different. Some will love cuddling and others will hate it. Some will make good eye contact and others will not. autism is diagnosed by looking for several of the symptoms, not just one or two.


Neither you nor I can diagnose autism but we can see if the child seems to have symptoms of autism or a developmental delay. If the child is younger than age three years, the family can contact the Early Intervention Program in their community (get the number for them). Explain your suspicions to them and the Early Intervention Program will conduct a developmental assessment. If autism appears to be a possibility, they will refer the child to an autism specialist. Usually, Early Intervention is a program of the Health Department, Mental Health, or a local hospital. There is no cure but with early behavioral intervention much may be accomplished.


when parents reACT NEGATIVELY

By the way, if after talking to the parents they deny the problems and/or get angry or some other unexpected result occurs, do not pursue the matter vigorously. If you are a constant irritant to this family, they may avoid you. You will have done your duty - just be around in case they seek your help later. The parents will have to decide what to do next. If they ask for help, fine. But do not continue to push them into hearing more about autism if they refuse to accept the idea. You have planted a seed of truth and it will grow. There is no child with autism who, if left untreated, will not eventually come to someone's attention. Unfortunately it may be later in childhood. The earlier you start treatment the better.


Regardless of the child's diagnosis, refer to Social Exchange Theory and Autism at the web site: to read about a way to understand and deal with behaviors. If you have regular contact with the child, follow these general rules: expect the best from the child, don't lower your expectations. Say what you mean and mean what you say. Ignore behaviors you don't want to see repeated and pay attention to and reinforce behaviors you want to see repeated. You can do a lot with good, solid behavioral intervention. Also read A Way To Think About Autism.


Finally, and most important of all, pray. God knows autism, He knows the human heart, and He can open doors when they are closed. Be a support to the family, be a help to the family. Hopefully, your fears will be unfounded and the child will not have Autism - don't worry about this possibility - just share their joy. You are not a professional diagnostician (make sure the family knows this) - you are a concerned friend.


But if the child does have Autism, be available and help the family find the resources they need. Listen to them, cry with them, and then roll up your sleeves and get to work with them. Thank you so much for being a concerned friend. You may be the person that changes the course of this child's life for the better. As Mordecai said to Esther in the Bible, "Who knows if you have come to the kingdom for such a time as this?" (Esther 4:14). Be hopeful, continue to be concerned, and most of all, be there!



by Gary J. Heffner, creator of The Autism Home Page at MSN Groups.


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Telling parents you suspect their child may be on the autism spectrum is no easy task. This fact sheet provides some pointers on ways to broach this tough issue.