Today is World Autism Awareness Day, created five years ago by the group Autism Speaks as a locus for fund-raising and spreading the word. It comes at the start to National Autism Awareness Month, which was created by Congress back in the 1970s. In commemoration of both, Huffpost Parents is looking at autism through the eyes of parents this week. Each day we will run an essay about a next stage of parenting a child with autism, starting with the moment of diagnosis, and going through school years, and teens, and entry into the adult world.
Twelve years ago, I was told by a doctor that my son Danny was on the autistic spectrum and I had no idea what to do. I was deluged by suggestions from well-meaning friends, family and co-workers, but many of them were useless. "Take time for yourself. Get a manicure," was the lamest, since I have always bitten my nails and of course began biting them even more then. Others were baffling ("Get Danny sacral cranial massages") and scary ("You have to get him into so-and-so's speech therapy clinic, they're the best, but there is a 30-year waiting list"). However, in spite of all the advice, it took me years to figure out what I really needed to know. So here, for parents of the recently diagnosed, I offer a short list of what I wish I had known then:
1. Ask your doctor for some Valium. Not for your kid. For you. Odds are you will need it to sleep. Or to stay calm while you're awake. Of course you may not need it, but it will probably help just to know you have it.
2. If you are the parent taking on the task of managing the child's care (in the vast majority of cases, the mother), make sure you get paid. That's right: No matter how tight money is, you and your spouse should pay you a caregiver's salary, even if it's minimum wage. Pay it on the books, so you get Social Security and unemployment insurance. Believe me, it will come in handy if you are in the approximately 80 percent of parents of autistic children who get divorced. And, if you are one of the 20 percent, you'll have some money put away for a rainy day.
3. Make sure any real estate or stocks you own have your name on them. (See above.)
4. Join a support group or befriend other moms you meet in the waiting rooms of your children's therapists. You will need people you can talk to and it will be hard for you to relate to your friends and family -- at least for the foreseeable future.
5. When you do deal with your friends and family, make sure you memorize a couple of general-interest talking points, so you can occasionally discuss something other than your child's autism. Sample topics: "Do they say it's going to snow?", "How about those Knicks?" and "Did you hear the latest statistics about the job market?" You really need your friends and family now more than ever and they do care about your child, but you have to remember, they still have lives that do not revolve around autism.
6. Practice saying the phrase, "How are you?" (See # 5)
7. If you have other children, find some way to give them your undivided attention, even if you have to hire a babysitter for your autistic child or let him zone out with a video.
8. Practice deep breathing and meditation. Although this may sound like a waste of time, it will come in handy when you need to keep your blood pressure from going through the roof and to stop yourself from committing homicide when other parents complain about how hard it is to get little Zach into a good preschool these days.
9. Two words: Common sense. You will meet all manner of quacks, charlatans and idiots on your journey through the world of autism therapy. You will meet many people who will tell you, "I can cure your child." Remember, be skeptical. There are dozens of therapies and treatments for autism, and that's because most of them don't work that well most of the time. Think about it: How many treatments are there for appendicitis? One -- appendectomy -- because it works. Autism is perhaps the most difficult-to-treat condition in the world. Ask lots of questions of anyone who wants to do anything to and for your child. If the practitioner can't answer you, move on. You have a right to get clear answers. Keep in mind that charm does necessarily coincide with a talent for therapy.
10. Know that while there will be ups and downs -- and I pray, for your sake, mostly ups -- your life will never be harder than it is right now. Which is another way of saying that it does get easier and better.
Anything I missed that you would like to add?
Follow Hannah Brown on Twitter: www.twitter.com/HannahBrown972
Lisa M. Dietlin: Making a Difference: The World of Giving -- April Is Autism Awareness Month
The author does bring up some excellent points regarding quacks who say they can cure Autism - focus on how to make your child all they can be by getting them the resources they need: visual resources, social skills training, technological adaptive applications, peer support groups, ABA and psychological therapy.
Another point; spend time with your other children, making sure they have breaks from Autism, important and also good for you as a parent. Also allow your life to be controlled by autism, encourage your child that is on the spectrum to be all they can be and don't coddle them because the world won't.
The author's suggestion about support groups rocks! This is the best advice in the whole article. It is so important to interact with others who are on this same journey. Your friends and family that aren't on this journey don't get it and Thank God they don't!
Whoever suggested humor everyday is the bomb! Laugh and smile, my daughter makes me smile daily because her outlook on the world is so amazing, she is a miracle!
Absolutely seek help, even if it means getting antidepressants. There is nothing wrong with asking for help, however, your suggestion is the equivalent to " Since my child now has autism, I'm going to stock up on whiskey to help me cope." Parents of children with ASD do have a super load of things to cope with--but immediately suggesting that all other coping mechanisms fail and that drugs rather than family therapy or counseling are the answer is disappointing. Again, there is nothing against using prescriptions if necessary, but only when exploring other healthy coping mechanisms too.
#2--bitter divorce, eh? I'm truly sorry if you did and I'm sorrier for you if autism was the culprit. The truth is, that you would then be the minority. Perhaps you didn't have a bitter divorce and are simply stating some statistics--if so, shame on you for not using a reputable source because those statistics are a MYTH. According to REPUTABLE sources, including Psychology Today (quoted), "...64% of children with autism lived with married or adoptive parents compared to a rate of 65% for children with no autism diagnosis." Hmm. Parents who are new to the autism scene have enough to overwhelm them, to perpetuate this fallacy is irresponsible.
I created my own list that speaks to more than autism awareness -- it addresses autism acceptance.
Here's my list and response to Hannah. (http://wp.me/pM1Cn-h2)
Sarah
Here's the thing,...th author is correct. Your situation might be silent tears and operas, but most families with autistic children face unimaginale struggles, high rates of divorce, high rates of depression and a higtened likelihood that "the other children" in the family will develop emotional/behavioral/legal problems of their own. So please, let's take our foot off the denial/defensive pedal and remember that every situation is not our own. Thanks.
that is so important to know
love the child and accept the child
but dont treat them like babies, they will all grow and become different as time goes on
working in lifeskills classrooms i see too many people take what the kids say personally and get upset about what they say
just move on and keep doing what is best for your child
they dont really mean anything by what they say most of the time
and always be very direct and to the point
dont say take a seat
say sit down ect.
hope this helps
In a world where many -if not most- cultures value boys over girls, seems mother nature is looking out for girls after all.
#2 - Look at your child as a present. Make the unwrapping of this gift be a joy in your life.
#3 - Commit to your marriage: it's easy to give up - but so much BETTER if you make it work.
#4 - Advocate.
#5 - Find resources available for you and your child: SCL, respite, OT, Speech. It helps your child, giving you time to yourself or spend with your other children.
#6 - When communicating with other parents, do NOT presume to tell them that their child can be "cured" because you "cured" or "recovered" your child. MY child is not lost - I happen to love him the way he is. (It's RUDE and INSENSITIVE and MY child is NOT a guinea pig).
#7 - It never gets 100% better - but it gets different. Every phase/behavior is manageable (it might not seem like it - but it is). When your 6 ft. 230lb 14-year-old son is throwing himself down because the grocery store only has unripe bananas - that, too, will pass.
#8 - Plan/prepare for your child's future. You do not have to keep them with you until the day you die: they deserve a life, too. Do not depend on your other children to be caregivers.
#9 - LOVE: your child: your other children: your significant other: NO MATTER WHAT.
#10 - Allow your special child to make you a BETTER parent and a
When he was first diagnosed I found that most people related to the term "autism" through the movie Rain Man .. and I had to explain how my son was not like that ..
It feels to me that the spectrum is much wider now .. more cases .. on a very broad range of severity ..
and that the public face of autism has changed as well .. that if I use the word "autism" to describe my son to somebody not connected with the disorder the image they draw in their head has changed .. often in their mind they picture a quirky, socially awkward gifted person (on the mild end of the spectrum) ..
and I think the wide range of the spectrum explains much of the wide range of reactions to this article on this thread.
It's not: Quit feeding them GMO fast food. Quit giving them 50 vaccines before they leave the hospital. Quit watching TV and pay attention to your kids.
It's: Give them more medication that will probably destabalize then forever and make em a lifelong consumer of Big Pharma!
What a world.