Living Well With Autism

Maybe you have suspected for a while now.  Or it came as a total surprise.  Either way, right now you're probably in a terrible state of shock.  You may feel as if someone close to you has died.  And you do have to mourn the life you thought you were going to have, as you adjust to the reality of the life you will have now.

I wish I could tell you this was a nightmare, and you will wake up.  So many days, I wish that for myself.  I do feel, with time, it gets somewhat better and easier.  And in a way, it hurts just as much.  I think the love for your child really helps pull you through each day. 

That said...this is not the time to be despondent.  Yes, you will grieve, but put yourself to work. You have too much to do.  You can be sad, angry, and afraid, but feel the sadness, anger, and fear -- and KEEP GOING.  Find your strength! Build your support system. Talk to your doctor about what can help you manage the stress. Take care of yourself. Develop a sense of humor. Love your child.

And forgive yourself, right now, for not being perfect and for never being enough for your child.  Because I am telling you right now, you can do everything and it will still not ever be enough.  This is just the nature of living with autism.

We all want answers.  But I don't believe things like this happen for a reason.

I don't believe this was God's will for you and your child. 

This is an awful thing that happened and it's nobody's fault and there's no great meaning behind it. But it is NOT the end of the world.

The only meaning now is what you and your child make out of the situation you find yourself in now, and in the future, and perhaps, how you might help others.

There is no cure for autism.

Lord knows I wish there was, but please try to accept this. 

Autism is a neurological disorder with a common genetic variant that has nothing whatsoever to do with your child's diet.  The brain of someone with autism is different structurally, and those differences probably happened in utero. 

All children have challenges in some form or another.  Your child probably has greater challenges.  You can address these and help a child live well with autism.  Direct your energy and resources to therapies and strategies that will help your child achieve his full potential.  Abstaining from cheese is not going to change your child's brain. 

While a child can and will improve with interventions, I do not believe any current intervention or approach can cure autism, anymore than you can cure Downs Syndrome, and all the people who claim that their children who genuinely have autism have been cured, in my opinion, are delusional, or trying to sell you something. 

These are must-do things I recommend you take care of first:

1. Get a medical diagnosis of autism.  You will need it to develop a treatment plan and to obtain services.  I recommend you see a neurologist who specializes in autism but you can see another kind of physician.  Expect your child to undergo a number of tests.

2. Consult with a private speech therapist.  After receiving referrals, have your child evaluated by a private speech therapist.  Many health insurance plans cover all or some of this expense.  I also recommend that you begin speech therapy -- the speech therapy you receive from public schools or public early intervention programs will not focus on the same goals, or deliver the same benefits.  I also recommend you consult with a private occupational therapist, and receive an evaluation of your child's gross and fine motor development.

3. Contact your early intervention program or public school system to receive a free evaluation of your child's needs and discuss intervention options.

4. Purchase and read More Than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder by Fern Sussman ($40).  If you could read only one book about autism first, this is the one I recommend, even if your child is verbal (mine was).

5. Take home safety precautions to protect your child.  Many children with autism are not afraid of common dangers (such as street traffic), may ingest non-food substances, and may be drawn to bodies of water. Even if your child does not worry you now, he may change a lot over the next few weeks, months, and years, and his behavior may not be what you predict.  Make sure he cannot get out of the house without your supervision.  If your home is not child-proofed now, or your child spends significant times in other homes, make sure there are safety latches installed and remove all toxic cleaners and anything else that may be poisonous (you can clean with vinegar, water, and baking soda for now).  Be especially vigilant if you live near a pool, or area of water.  Drowning is the number one cause of death among children with autism.

If your child has just been diagnosed, chances are good he is about two years old, give or take a few months.  Of all the things you are wondering, you are probably wondering what is coming down the road, and you're probably not getting too many answers.  What parent hasn't wished for a crystal ball at this point?

Autism manifests itself in different ways in different children, and it's difficult to predict how it will impact them as the years go by.  Most children with autism have developmental delays, and at least 40% meet the criteria for cognitive impairment (higher if the child is female).  Also, some children with autism also have to cope with challenges, such as epilepsy or other conditions.

So, you can't know exactly how it will play out.  But here are some things you can think about as you prepare for the future.

Age four may hurt you worse than two, but life tends to get better as the child matures.  Right now, even with your child's behaviors, as a very young child he can still be alongside peers or exhibit behaviors in the grocery store and not elicit that much concern.  As your child's playmates turn four, however, they take a huge developmental leap in language and pretend play that usually leaves your child behind, making him seem that more different.  Your child may not have developed in other ways.  For example, my child did not potty train until five.  He still needs help with some daily living tasks as a teenager.  I seem to recall that the most difficult years for me were between age 3 and age 8 or 9, with improvement just about every year, and a significant improvement after age 12.

As your child enters school, he may be included in the general education setting, go into a special education classroom, or spend time in both settings.  It's really hard to find a classroom that's right for every need of a child with autism.  How much of a problem this presents depends on the child.  My child started out in special education in a public school, then he spent two years homeschooling with me, and then re-entered school when he was more available for learning.

Puberty delivers its own set of physical and learning challenges as the child becomes a young adult and there is an intensive period of brain development and body changes.

I guess what I'm trying to tell you that all that emphasis on early diagnosis and early intervention is well and good, but you will be still be looking hard for supports after age five and thereafter.  Early intervention is not going to take care of your autism problem.  You are in this for the long haul.

But here is the GOOD NEWS.  Your child will constantly surprise you in wonderful ways.  He will do things you thought he could never do.  Just this month, I took my son to a Congressional hearing.  He goes to the restaurants and movies and plays with me and I would have never guessed that at age four.  Your child with autism may reach milestones later, but he will reach them, and they will be all the more glorious because you worked so hard to help make it happen.

Okay, I know you are devoted 100% to your child, and that's a good thing, but try a little bit to look nice, because people respond positively to people who look nice, and you need all the help you can get for your child. 

So, when you go to doctor's offices, school meetings, and therapy appointments, do put on a little lipstick and some earrings at least.  I don't know if you have been in these waiting rooms.  You see some pretty depressed looking moms in sweats.  You will get more time, attention, and respect if you look nice. 

You do not have to spend a fortune.  I bought a trendy purse at Target for $8 once and my son's therapists loved it. 

You want people reacting positively to you.  You want people opening the door for you when you've got your son in a stroller.  You want these things because the lift will help keep you going, which is good for your child with autism.

I'm addressing this to the moms because those are the people I see the most "on the ground" not that you dads aren't showing up too, but 90% of the people taking their kids to school, therapy and the doctor happen to be moms.  So, ladies, allow yourself to be beautiful.  I know you feel like hell.  But autism is not the END of the world.  Don't forget to have fun.  And one compliment can keep you going on a bad day.

Did you ever notice that many kids with autism tend to be beautiful?  They are.  They might not want you to comb their hair, and they might be drooling or chewing their shirt, but they are gorgeous. 

So, invest some time and care in how your child looks, you will get better services for your child.  If you don't believe me, just try it.  Whenever you go out in public with your child, or he goes to school or therapy, make sure he looks adorable.  A lot of therapists and special education teachers are young women, and nothing makes them go ga-ga quicker than a kid who looks really cool in some nice clothes and shoes (ones that are comfortable for them, of course). 

Get them good hair cuts, not the awful hair cuts you see on some kids with special needs.  Social acceptance matters.

If people think you care, they will care too.  The cuteness factor will also buy you some much-needed forbearance if your child acts up in public, trust me.  I have too much experience with this to steer you wrong :)

For this reason, when you go out, especially to a restaurant, make sure you always have a change of clothes in the car (for you, as well, if you have a kid who tends to gag and throw up because of sensory sensitivities).   I used to keep at least two extra shirts in my bag, so we could do a quick change, if needed..

Even now, I keep a spare t-shirt on me so my son can change if he gets too much food on his shirt. 

Acceptance is a process.  Some people come to it more easily than others.  I talk to lots of moms who have husbands who still struggle with the diagnosis, and some dads come to terms with the autism pretty quickly, but others in their lives still tell them "he'll grow out of it."

Help people see that your child is a child, and not a diagnosis.  That is why I say my son "has autism" and not that he is "autistic."  People are not autistic.  Behaviors are.  Your child with autism is more like other children than he is different from them.  There is much more to your child than just autism and it's your job to help people see that.

But acceptance begins with you.  Can you find a way to work on the challenges of autism, while still loving your child unconditionally, as he is?  Are there some aspects of your child make him, in fact, rather endearing?  His honesty?  His observances?

Has he helped you see things in a different way? What is he like, apart from the autism? Does he like strawberry ice cream, large dogs, and the Beach Boys? When people ask him what he is like, emphasize those things.  Help people see that he is more like them than he is different.  That helps them accept him and include him in their lives.

And here is another thing about acceptance: can you see that the autism has made you a better person in some ways? Not that you wouldn't change it tomorrow, but looking at it that way, haven't you become more creative, patient, and accepting of others?  Are there ways that your child's autism has inspired others to be generous and understanding?  You can accept that, too.

Some people are never going to get it.  Some people are never going to fully accept your child, and your new life.  Hopefully this won't happen to you, but it happened to me, and it's common. 

Some people were great and suppportive.  Some people said stupid things.  Some friends and family members told me I should give my son up for adoption, and start my life over.  Some friends stopped calling and inviting us to their cookouts and birthday parties after my son was diagnosed.  More than I would have guessed.  My husband (who became my ex-husband) blamed me.  Teachers may insinuate that you are the problem and not the autism.  My mom doesn't send cards or gifts to my son because she thinks he does not know the difference.

Does it hurt my feelings?  Yes.  It hurts.  Not as much as the diagnosis, but still.

Remember this: it's not you.  It's not your child.  It's their problem, and their loss, and nothing you say will make them change.  Everybody I know who has a child with autism has a story of how family or friends let them down. 

Lots of people will drop out on you, and you will be very blessed if you feel like you have all the support you need when you live with autism.  If I were you, I would not waste too much time feeling bad about these people.  Take it from a single mom: Thanksgiving and Christmas are still meaningful, even if it is just the two of you.  Vacations and birthdays are still fun.  You can still live well with autism without their involvement.

No matter how he appears to want to be alone, or what you are told by "experts," do not believe that your child does not experience emotions, or that he can thrive without love and affection.  A child with autism is NOT a robot.

One neurologist told me when my child was diagnosed that my child did not feel love, or feel the need for love, although of course, I should show him love.  I will say the resident attending with him looked quite shocked, and of course, I went home and cried my eyes out.  Then, I found another neurologist.

I "fact-checked" his claim with my son's therapists and teachers, all of whom had worked with hundreds of children with autism, and they

were outraged -- they said this was patently false.  My son's OT said "Have you seen the way he looks at you?"  So don't believe everything people tell you, especially if it goes against your gut.

Don't give up.  Keep trying to reach your child.  Learn how to engage and communicate with him.  It will improve over time.  Children with autism may seem to prefer to play alone but they are coping with intense stimuli, often do not have the full range of communication and play skills, and have other challenges (such as gross motor challenges).  You can and should try to engage with your child. 

Your child's emotional life is vital and important, and don't let anybody tell you different.