13 Secrets Parents Need to Know About Autism but Haven’t Heard Yet

I am a parent. I have Asperger’s syndrome. I have two grown children, one of whom is on the autism spectrum. I am very aware of how parents can react to an autism spectrum diagnosis in their child. It’s not hard to find descriptions of their reactions on autism support sites on the Internet or in the popular media. I know how my friends and acquaintances have reacted to their child’s diagnosis. It’s unfortunate that many parents are frightened by the diagnosis. It’s tragic that they are frequently given endless amounts of bad advice which leads them to waste their time and energy and money. Some of the ways they react emotionally, and some of what they do to their child is, at the very least, less than optimal for their child’s development.
The good news is that there are parents who demonstrate that it’s possible to get the diagnosis and not panic and not despair or do so only momentarily. These parents deal with the sometimes harsh and disabling realities of autism by making more level headed choices. They accept that autism is a part of their child, and from my observation, these parents have children who do better in life than those whose parents stay in panic or desperation mode and never learn to see the good things that are part of their child, some of which are there because of their child is autistic.

The following are some points that I believe will help parents to stay away from panic and despair, and to move toward acceptance which in turn will move them toward being more effective parents with happier children.

1.  Autism is not new. Any problem parents of autistic children have now others have dealt with them in the past. This means you can use what others have learned about autism to help you. You don’t have to reinvent the wheel.

 2. Autistic people contribute to their communities in many ways, no matter what constellation of obvious abilities and disabilities they demonstrate. Autistic people are valuable as they are. They don’t have value only if they can be transformed into less obviously autistic people.

3.  The very wiring of an autistic brain means that the autistic person is likely to have significant and unusual abilities. Those abilities won’t always be make us employable, but autistics usually have excellent memories for facts accompanied by a drive to collect them. These abilities shouldn’t be seen as disabilities or freakish “splinter skills” just because they are less common among non-autistic people.

 4. The term autism spectrum does NOT describe a line upon which a series of “functioning levels” are laid out stepwise, with “low functioning” on one end and “high functioning” on the other. Just because a person seems to belong to one category at one point in their life doesn’t mean that he or she will seem the same at another point in his or her life. The situation the person is in often dictates how “functional” the person is. Children, especially, can get moved from one autism spectrum diagnostic category to another during early childhood.

5. Listen to and respect autistic adults.  They may be your best resource for information about autism, even if their apparent “functioning level” doesn’t seem to match your child’s. Keep in mind, they are adults, whereas your child is a child.

6.  Professionals are a great resource, they can also be a big disappointment. Some professionals only know the doom and gloom version of autism. This can set you up to see only where your child “fails.” This is dangerous because it may cause you to overlook the places where your child is succeeding. On the other hand some professionals will try to sell you on expensive and exhausting cures for your child. They give the wrong kind of hope. They may convince you to attribute your child’s development to a drug or therapy that is not responsible for the development at all.

7.  Autistic children love their parents. You may have to learn to see how your child expresses affection and not take it personally if your child doesn’t show affection in the way that typical children do. Deaf children may never speak the words, “I love you,” and Deaf parents may never hear those words, but it doesn’t mean that Deaf children don’t love their parents.

8.  Don’t buy into the common “siege,” “attack,” or “war on autism” metaphors. Similarly don’t listen to the rhetoric that says, “your kid is an empty shell,” and “kidnapped, soulless husk”. Ignore the threats that if you don’t do this or that your child will “end up in an institution.”  Treat your child with gentleness and respect, but also remember that he or she needs to be challenged and exposed to new experiences.

 9.  Don’t let anyone make you feel like you aren’t the most important teacher in your child’s life.  Don’t let them make you feel like your child is so unusual that only someone with an advanced degree can help him learn, thus making you, the parent, superfluous.  

10.  The idea of “critical periods” or “brief windows of time” during which you can teach your child something, has been exaggerated and oversold.  No one is advocating that children be neglected, but pushing hard to teach or otherwise transform a child in a certain time period could be as damaging as outright neglect.   Autistic development is not the same as typical development.  Autistics learn things in their own way, sometimes on a very different schedule than non-autistics do.

11.  All children have what might look like lags development, likewise all children have what look like sudden leaps forward in development. This bumpy trajectory may be more pronounced in autistic children.  This fact makes parents of autistic children particularly vulnerable to attributing a regression or the acquiring of a new skill to something that changes in the child’s life. In other words, just because someone says, “I gave my child this pill and he started speaking the next day….” or “I changed my child’s diet and suddenly he was making better eye contact….” it doesn’t mean that it was the pill or the diet that initiated the change, it can easily be a coincidence.

13. If you find an M.D. who doesn’t help with your child’s health problems because he or she sees every physical symptom as “autism,” or conversely, if a doctor sees only a genetic or congenital disorder and health issues that your child may have, and can’t see the traits of autism or learning disabilities your child also has and how they impact your child’s health, you may need to educate that doctor about how your child is different, or you may need to find another doctor, one with more experience treating children like yours.

This was a guest article written by Autism Diva. She runs the Autism Diva Blog.