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.

3 thoughts on “13 Secrets Parents Need to Know About Autism but Haven’t Heard Yet”

    Comments

    • narcolepticpenguin on April 20, 2015

      Being a person on the spectrum I grew up in a very abusive house hold,id rather not go into details,but I will say I do have vivid memories from my first day home from the hospital and on,like when I mention to people I remember my first weeks of life that find it hard to believe,but there it is my life,I remember as a kid I knew I was different but it never really occured to be that I might have autism,I was too busy trying to fit in or stay alive at home. it wasnt until after I turned 16 that I began torealize that what others saw as a disability was simply who I was and did not need to be hidden away,or become something I should feel ashamed of. I found if I could read about it I could replicate it.one summer I worked at a camp called talisman camps for children with developmental disorders. I was amazed with how incredible these children were,again at the time I did not know I was already diagnosed on the spectrum I just knew people saw me as weird.so after really connecting with these kids so easily I felt I should look into myself.at times it is very difficult growing up with autism,but it should never be seen as something to be ashamed of,iv come to look at autism as the human attempt at achieving evolution,to some that may seem far fetched,yet there it is. im an adult with a super genius iq yet I work in minimm wage,with 4 tech degrees and 3 completed books,what im trying to say is the messege your trying to get across is very important just because we are labed with a disorder doesnt mean it needs to be seen that way,as far as I can tell we are only different,not broken.

    • katy_rome on July 24, 2016

      Autism Diva, I loved this article. I recently discovered that my son’s autistic, he’s 7 nearly 8 years old. Strangely I never figured it out before, for a simple reason. I guess like many I was convinced autism was defined by lack if empathy, while it is so obvious that our son has almost supernatural empathy, not just for people but also animals. So I never considered it. Then 2 months back I read a letter in the New scientist by an autistic woman, saying that re. an article in a previous edition on empathy, she was convinced that the detachment comes rather from oversensitivity and over-empathy leading to an emotional shutdown in self-defence. I was stunned. From birth our son needed constant touch, he needed to be held and spoken to, or sung to, and he almost never slept.

      Before having kids, I’d had no real experience of children or babies, when our daughter came along I assumed she’d need the same and she quickly put me right! I did my best, not always successfully, to give them both what it seemed they needed and were asking for. I guess I was a hopelessly liberal and indulgent parent. My husband is also a gentle, loving soul, i think we’re lucky to have such a family!

      All was harmonious, till school. Then everything went horribly wrong. Our son just couldn’t do that. He seemed to change character, it was awful. He began to hate people, retreat into himself, have panic attacks and violent episodes. He couln’t look anyone in the eye anymore and sucked his lip till he got sores. Against everyone it seemed (I remember writing a 5 page document of pros and cons to convince my rational husband), I took him out of school. years later, after almost nightly rages, nightmares, and suffering..during which I’m there, holding him if he wants that, if he’s angry and doesn’t want physical contact, I just sit nearby saying ‘I’m here when you need me’, and making sypathetic noises, he’s starting to tell me, often cryptically and through questions, what happened to him at school. It’s devastating, but so important it comes out. Like the anger. Like Ron’s slugs.

      He’s happy again now, he’s got a couple of really close friends (one at a time please!), looks people in the eye again, is confident and showing lots of interest in learning – mainly science, maths, computers, technology, space, nature and animals. He won’t handwrite, though he knows how, and my instinct tells me to leave it be.

      So to sum up, he is an amazing, amazing boy. With support and love, and nurturing of his unusual gifts, he’ll be just fine. More than fine :-)

      We’re a lucky family, and I feel a lucky woman indeed to have the children I do. I realise that all situations are totally different, though. I do know I’m mostly incredibly lucky to have the supportive extended family I do, and a whole bunch of other factors that are singular to us.. And whatever happens, for parents who find the burden unbearably heavy, it is of huge importance not to blame yourself, ever. That’s always nothing but destructive. Just listen to John Lennon on this :-)

    • Marion Phoning home on December 19, 2016

      After a special Ed teacher suggested my 4 yr olday be autistic, I started listening to as many books on Autism as I could. I listened to Neuro Tribes, and found this forum. I believe my Son and myself to be on the spectrum. I am hoping to find other Mamas or Dads or anyone with ASD to advise me. I am hoping to finally find my tribe. But also I agree with all of the points this article gives. I want my Son to grow up being proud of his neuro diversity. I am unsure of how best to handle the school element. He is having a difficult time this year in his preschool, and I don’t feel his teachers are at all flexible or knowledgable. I don’t know how to find the other autistic families in our area of Norwich Vermont. I am less freaked out and more excited that we could be on our way to being accepted as we are. If you are reading this and have any advise in the vein of celebration and advocation I am eager to make contact. Thank you M

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