Living Well With Autism

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. 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 have been cured, in my opinion, are delusional.

Trust your instincts.
You will learn things, surprising things, from teachers, doctors and therapists. However, your instincts always matter. You must learn to trust your instincts, if you have not already. It is ok to wait on a decision about a therapeutic intervention until you have more information or until you feel more comfortable about it. Do not let people pressure you otherwise--a common pressure point is
when they say how little time your child has before a development window of opportunity closes--don't buy it! Early intervention is important, but the window never really closes.  If you make a decision based on the best information you can obtain and your instincts, you will never blame yourself if you are wrong (which will be rare). However, if you go along with something that you knew in your gut was wrong, you will never forgive yourself when things turn out badly. Your child needs you to be his advocate, and hard as that is, no one can do that as well as you can.

Get your butt off the waiting room couch
Lots of parents pay thousands for private speech therapy and occupational therapy for their very young children (18 mos - 5 years), then wait in the waiting room! What good is that?

This is what I suggest: from the get go, be an observant "statue" in the therapy room. Don't intervene or communicate unless your therapist asks you to (my child was totally comfortable with me in the room, and often the therapist asked me to lend a hand). This will take humility and restraint but you can do it.

Of course, if you see that your therapist and child don't have a connection, then fire her.  I had to do that once.  But if she's doing a good job, just watch and take mental notes. You learn so much!

Don't be afraid to tell her at the close of the session if something would help, however. Your instincts are usually right. I had to convince one therapist to use picture cards; another to move my child to a therapy room with a window. Both times I had the satisfaction of hearing that I was right (they were dubious at first) and compliments on how well I knew my child.

But mostly, it was me learning how to communicate and engage with my child and strengthen his skills in a fun way. Especially when they are young (under five), these sessions should be like play, not work, because very young children learn through play. And they need breaks.

They taught me how to play and engage with my child in a way he could enjoy and understand.  Every important thing I learned in those first three years after he was diagnosed, I learned in speech and occupational therapy by watching the therapists work with my child. 

Then I went home and did this with my child. You can, too!

So the comments that I have on this are for very young children -- from first diagnosis through about age five.  After that, there's school, and when puberty hits, you will probably need a whole new set of resources.  So let's just talk about early intervention.

You can help improve the symptoms of your child, and that is where you should be devoting your energy. The most effective ways to do that, in my opinion, is by addressing directly the challenges your child has. ABA is not going to do that. Speech therapy and occupational therapy will help, and Floortime and RDI will help, but you will have to customize each therapeutic experience to your child's own needs. And YOUR needs. And your family's needs.

Don't let anyone tell you if you don't do Floortime 8 hours a day, or RDI 8 hours a day, or ABA 40 hours a week, that it's pointless.  Because they WILL tell you that!  Do what you can manage, and work up. No one can manage that amount of intervention, realistically. Those people who are telling you to do it DO NOT ACTUALLY HAVE KIDS! What does that tell you? Adapt these interventions as you like and weave them into your lifestyle.  I have found a little of something is better than a whole lot of nothing.

Fire any therapist you don't like promptly and heartlessly and find someone you do like who really gets your child. Really.  You don't have time to lose, and you will find someone better.

Find great special needs babysitters and pay them absurdly well. We found ours through our county's therapeutic recreation department.

Personally, I found ABA (Applied Behavior Analysis) and VB (Verbal Behavior) less than useless; actually harmful. My son regressed with both, and I feel they only reinforce the deficits associated with autism.  That said, there are aspects of ABA (not trials) that can be incorporated in the classroom and that I can see work.  I just don't see the point of spending a year on flashcards.  I guess I am just not an ABA fan.

Children with autism do have visual motor processing and auditory processing challenges. But before you take out a second mortgage to try auditory training ($10,000+), visual training, GFCF diet, DAN protocol interventions, which are all very expensive, I personally feel they are useless, and that the people associated with these so-called interventions are exploiting the desperation of loving parents.  Chelation can actually kill your child. You can address the child's need with legitimate therapies that work.

If you are truly committed to helping improve the life of your child with autism, learn how to use visual helpers, put your money into speech therapy and OT and find someone to teach you Floortime, and learn how to do Declarative language from Living Well with Autism. These approaches really work.

Music therapy and therapeutic horseback riding are expensive but beneficial in terms of helping your child develop leisure skills and follow directions, and although they are not true autism interventions (although they can be effectively used to address autism deficits).

What really helps? In my opinion?  Spend TIME, lots and lots of time, with your child. And do the stuff I talk about on this site.  It takes a little more effort but the payoff is HUGE.

Let me say, I am not a doctor and you should take this advice right to your child's neurologist, or ideally at least three doctors (neurologist, developmental pediatrician or psychiatrist, regular pediatrician).

Each medicine has side effects, and some of those side effects are worse than autism, or intolerable, in my opinion.  But in cases of aggression or self-injury, or other instances, you really have to do what is needed and best for  your child, and a reputable doctor can help you decide about that.

Commonly prescribed medications include Risperidone (possible side effect is Tardive Dyskenesia), SSRIs such as Prozac (possible side effect is activation or mania), and anti-epileptics, like Depakote and Topamax (which can cause liver failure), among others. The side effects are rare, but the possibility is real, and you should be educated about it.  Attention drugs (Ritalin, etc.) are sometimes prescribed for some children with autism who also present with co-morbid symptoms of ADHD.

The question you have to ask yourself is, without this medicine/intervention, is my child's challenge getting in the way of him doing what he really wants to do (but can't?).  Is it necessary to my family's happiness? Are the side effects reversible or tolerable? If the answer is yes, and your doctor is recommending this course, then perhaps you should seriously consider the medication.

My son has had periods in his life, especially when he was younger, when it seemed the prescribed medicine did more harm than good, so we took him off of the meds. When he got older, and was better able to tolerate the side effects, conservative, low dosage amounts of prescribed medicine seemed to help quite a lot.  He is very good about taking it and even reminds me to give it to him each day.  Every child is different, but don't be afraid of prescribed medicine, if it will help.

Yes, your child loves you.
Please don't let anyone tell you, as one misguided doctor told me when my child was first diagnosed, that your child cannot feel love for you. This is just not true. Children with autism have intense feelings and emotions, although you may not see the entire range of emotions in a young child. For example, you might not see a child with autism express bewilderment or slyness. But you might be surprised at how they can be compassionate. Your child loves you, even if he cannot show it the way other children can.

People say children with autism prefer to be alone, but that is not my experience. I think they like company, but they don't have play skills and social skills, and they have to stim to cope with sensory input, so they seem aloof. But I think children with autism need and want people just as much as anyone else. And they need downtime, too. Your child needs your help to understand, fully experience, share, and regulate his emotions.

You can teach your child to say I love you.

Just because your child is not spontaneously hugging you, kissing you, or saying I love you, doesn't mean he can't do it. You can teach him how, if for no other reason than you want it. I had to teach my son, almost trick him, to say I love you. I knew he loved me but I needed to hear it. I used picture cards.

I was patient. The hugs were easier, he liked those, but it took eight years to get kisses!  Pick what you want, and be patient, warm, and use lots of repetition. What at first seems scripted and unnatural will become spontaneous and authentic in time.

I would not, however, force things that make him truly uncomfortable, such as eye contact, or receiving a light touch. For example, eye contact is uncomfortable for many people with autism and studies do show that eye contact stimulates a "fight or flight" reaction in children with autism that is
entirely beyond their power to control.

Be sure you find ways, meanwhile, to emotionally and physically connect in a way that he can accept and that makes you both happy.

Your child will get better services if you dress him well.

You will be teaching your child social skills and manners, just as you would with any child you would raise.  But children, especially very young children with autism, are going to have off days.  There are going to be embarrassing meltdowns.  Your child may engage in behaviors that appear strange.  Yet, you have to go to the grocery store and the bank.  And it's good for your child to be in the community.

Luckily, most children with autism tend to be beautiful. Did you notice that?  They do. Their hair might be messy because they don't like it to be combed, but their eyes and long lashes make up for it.

It makes me so mad when I see a parent -- probably albeit a struggling and ovewhelmed parent -- dress their special needs child in shabby or unpressed clothes.  Or get those really bad haircuts.  Hey, we all do it sometimes.  But one thing I did do was always have extra outfits in my bag and in the car. Young children with autism are messy.  They spill food on their clothes, and sometimes chew their collars.  We didn't go out without at least three t-shirts because my child was a messy eater for a while, and he also threw up a lot, from sensory sensitivities.  Then he went through a phase where he chewed his collars a lot.  So we always had extra clothing, wherever we went (for him and me, because he usually threw up on me).  Because I just feel it's important for my child to look good.

Dressing your child well (and kind of cool) even if he's only two years old, will earn you, as a parent, lots of credibility with your child's private therapists, baby sitters, teachers, and at the grocery store and play group. Maybe it's not right -- well, of course it isn't -- but it's how it is.  People just like cutely dressed kids more. Honestly, they'll spend more time with him and the quality of services will also be better. My son's therapists were ENCHANTED with how cute he was and his clothes.  They noticed.

And you can buy the clothes at Target, but make sure you get GOOD shoes--such as Stride Rite or Nordstroms. Not only are they better for your child's feet, but the therapists and teachers and playground moms DO notice the child's shoes. They are snobs about it, frankly.  I am not kidding.  It wouldn't matter to me, but it makes a difference in your child's status, so go for it.

Of course, the older your child is, the more important this becomes, as clothes and backpacks, etc. are just one important factor in social acceptance among peers.  Make sure their hair looks like their peers, and check out what the other kids wear.

You don't have to spend a fortune, but they do have to look good.

I wish I had a crystal ball and could answer that for you, and for me.  Here's what I know, speaking only very generally.  What is in store for your child could be quite different or better. 

Age four hurts more than age two (but things get better around age 8 or so)
As horrible as you feel at the initial diagnosis, you do start to feel somewhat better soon, because at least you have a name for it, and you start to celebrate every little achievement. You usually start interventions and you often see great improvement. The nice thing is, at age two, other people don't really see your child as that different. There are plenty of two year olds at the playground and grocery store who are acting similarly. You can put them in play group together and things work out.

Age four is where your heart starts to break again. At four, neurotypical children surge forward developmentally, especially in their ability to imaginatively play and relate to each other. Now, having playgroup together doesn't really work that well. Their peers start to notice how different your child is. All that hope that you had that maybe it was a phase or something he would grow out of, that just crumbles. Your child has autism, and will always have it. Everybody starts waking up to this fact. Even relatives may become distant. Maybe you stop getting so many birthday party invitations as before, you might even lose a few friends. I lost all mine. Yes, it hurts.

Age five was hard for us, things got better around age 8.

I seem to recall that age five was a particularly difficult year, and that things improved quite a bit between age 8 and age 12.  Children with autism have learned a school routine by that point, and it's comforting to them. My son adored school during these years.

Expect things to change up with puberty: more aggression, more embarrassing behaviors.

When children with autism move into puberty, sometimes they will become aggressive, as mine did, but he did settle down.  A few who did not have seizures may develop them (but not all).

When children with autism discover how wonderful their private parts can make them feel, it can be pretty hard to get them to stop touching themselves or removing their clothing in public or at school.  Just remember, it's a common problem, so don't feel too embarassed about it to discuss it with the teacher or to talk about strategies..  I feel children with autism deserve to feel good this way just like anybody else, but the challenge is teaching them socially appropriate, private ways to address this emerging need.  This book has good tips for dealing with that: Taking Care of Myself: A Healthy Hygeine, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel.

Growing Up

Most children with autism will require intensive, individual instruction for the better part of their school years.  Their ability to learn academic content and participate in extracurricular activities will vary widely from child to child, and from year to year.  Nearly all will need help with functional life skills, communication skills, and social skills for the duration of their school career. Children with autism can stay in school until their early twenties, in many cases.  

Most children with autism will require lifelong support for daily living activities, like working, going to school, having fun, sharing chores in a group home, and other functional life skills.  

One thing to remember is that it does take children with autism, in many cases, a long time to learn certain skills, like using a fork or using the toilet independently.  But they do learn.