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, or trying to sell something.  That's their problem. Living well with autism is my challenge, and yours.

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. 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!

Okay, but HOW do I keep going?

The most important thing is that you are happy.  As happy as you can be, given the circumstances. "If Mama ain't happy, ain't nobody happy" should be your mantra.

It is more important to your child that you are happy, perhaps, than if he gets 40 hours a week of whatever intervention. If you can do both, wonderful.  But balance the sacrifices you will make with also having a life and enjoying your child's youth. 

the day, it is a good thing. When I became a happier person, and started paying more attention to my needs, I saw my child improve tremendously.  What a surprise!  The best therapy ever for him!  Maybe to thrive, children need to see their parents be happy.  And it's far easier to give your child what he needs when you have got what you need, yourself.

To me, acceptance is a process; it is not instant.

I still feel that acceptance of my son's real and true needs is something I am still coming to terms with, even after all these years. 

Can you find a way to change the effects of the autism, while still loving your child unconditionally? In your heart, do you wish for a cure for autism, while recognizing that some aspects of your child make him, in fact, rather endearing?

Has he helped you see things in a different way? What about his refreshing candor and innocence? 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.

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? Has it ever turned out to have some good aspects, in a strange way?   This is new to you now, but maybe you have already seen this.  It's something to think about.

Living with autism will make you sad, often, and that's normal.  There is a difference between sadness and depression, however, although it can be tricky to detect.  Depression is a real and likely side effect of living with autism, so it's important to recognize the early signs of depression, in yourself or in others. You may have one or more of these symptoms

• Sadness
• Crying spells
• Body aches, headaches
• Irritability
• Loss of interest or pleasure in normal activities
• Reduced sex drive
• Insomnia or excessive sleeping
• Changes in appetite
• Restlessnes
• Slowed thinking, speaking or body movements "feeling numb"
• Unable to concentrate well; memory loss; "spacey"
  
• Fatigue; feel everything takes immense effort to do
  
• Feelings of worthlessness and futility
  
• Recurring thoughts of death, dying or suicide: if so, CALL 9-1-1 now!

I have seen a LOT of depressed parents of children with autism, and have been one myself.  Living with autism is stressful, fatiguing, and it can be socially isolating.  From what has been explained to me by my physician, the ongoing stress releases "stress hormones" into your body.  A little stress hormone is a good thing.  It can help you do what you need to do (e.g., to get away from a bear).  But ongoing stress can really break you down, and develop into depression. It is not your fault!

There are excellent treatments for depression, including counseling, support groups, exercise and lifestyle changes, and medications, and they work. Be sure to get medical attention and regular check-ups, particularly if the stress is causing you to become depressed.

Helpful information from the Mayo Clinic about depression.

There is something true about autism: you can kill yourself trying to do everything to address it, and still, it will never be enough.  It's relentless.  You have to know when to say when, and take care of you, even though it feels all kinds of wrong not to be working 24-7.  Be sure to get breaks, even if you don't think you need them, and do something like go to a gym or enjoy a hobby.  Don't neglect your intimate life, if you can manage this. It can keep you going.  And don't be afraid to ask for help. You're going to need it.

I remember every time, in the beginning, that I got some time alone, I would start crying.  In fact, that still happens quite often.  It was like I was storing up my emotions until I wasn't in front of my child. But it's okay. You can be human around your child. They understand more stuff than you realize.

Early intervention is important, but you have to be able to live with the schedule, expense, and arrangements.  You still have to have a life.

No matter what you are told, there is no magic key.  ABA is not the magic key.  What works for each child is different for each child, and importantly, each family.  We spent thousands on interventions that did not work, and some that cost nothing worked better than anything.  

You can do interventions you can afford and do them yourself and your child will improve.  Keep your priorities straight.  Don't let your sense of self, relationships, or enjoyment of your child, consumed by autism 24-7. Keep it in balance.  The autism isn't going away, but other parts of your life need attention, as well.

Your child is a CHILD first and a child with autism second.  Don't neglect the child for the autism.  Don't let anyone treat him or her like a diagnosis.

You have the right to have a life, including a family life with your child included in that. There is no law that says you have to send your two-year-old to school if you think he's not ready, either.  I did, and I really wish I had waited another year. But if it's the right decision for you, go for it.

These are the interventions I personally recommend as a must-do:

1. See a neurologist. Get references and see the best, most qualified pediatric neurologist you can find.  Then see one or two more.  Get the requisite testing.  Think long and hard about medication at this point.  That is a decision between you and your doctor, but be sure you research all the side effects yourself.  Be informed about your child's care.
2. Get publicly provided evaluation. Have your child evaluated (free) by the public school system (or local government, if he or she is under three years old). You may qualify for in-home services.
3. See a private speech therapist and occupational therapist.  Get references (check your local Autism Society of America chapter) for private speech therapists and occupational therapists.  You will proabably need to try several to find the right fit for both you and your child (you both will be learning).   Get evaluations.  The private speech therapy and occupational therapy we paid for was worth every dime -- but sit in on the sessions, so you can learn, too.  My preference for very young children were therapists who took a "Floortime" or modified "Floor time" approach -- be sure you also provide them with visual helpers to use during sessions.
4. Learn how to connect.  Purchase the book "More Than Words: Helping Parents Promote Communication and Social Skils in Children with Autism Spectrum Disorder."
5. Visual helpers and social stories.  You can find them on this site and the websites I recommend. 
6. Sensory supports.  Ask your OT and check the Integrations catalog for resources.  Read The Out of Sync Child.  Sensory sensitivities ARE real, and sensory supports HELP.
   
7. Therapeutic recreation groups.  Investigate resources offered by your local jurisdiction, such as parent support groups, play groups, summer camps, etc. Our county has wonderful resources.

These are the  interventions I recommend with caveats:

• Music therapy. I believe this is helpful, if you have the money for it, and your child is available for this kind of learning.  My son's music therapy is $40 for a half-hour and he clearly benefits from it, but he also loves music.
• Riding therapy. This can be very costly and hard to arrange.  We saw some benefit, but not enough to continue with it. This is a "nice-to-have," perhaps not a must-have.
• RDI (relationship development intervention).  It can be expensive to work with a certified therapist. This was one of those interventions where you have to take the best and leave the rest. RDI proponents will tell you you have to embrace all of it and live the lifestyle for it to work.  I believe in balance.  Use the Communication helpers (using Declarative Language) derived from my RDI training here, and you will have a big head start.
• Floortime.  A very useful intervention but proponents may tell you you have to do this 8 hours a day for it to be effective.  No one can reasonably do that.  Learn how to do Floortime with your child, and integrate it into your day.  It can be helpful to see someone who is trained, like a speech therapist, do it with your child, to really understand how it works.  The More Than Words book is the best primer for this.  This will help your child engage you with you, especially very young children, and it's a natural for therapeutic settings, like speech therapy and occupational therapy.  You still have to say "no" sometimes to your child, however.
• Medications.  Can be helpful, but can also cause problems.  In our experience, they were more effective and better tolerated as our son became older.
• Social skills training, in groups.  If your child is so high functioning he can benefit from group social skills training, my thought is, he or she probably doesn't need it!  You still need to teach social skills, but I think this is better done one-on-one, in natural settings, and with social stories.

These are the interventions I do not recommend:

• Special diets, DAN protocol.  I do not believe they work, nor do my son's doctors.
• Chelation, hyperbaric oxygen, immunotherapy, etc.  Actually can be useless or quite dangerous.
• Refraining from vaccinations.  Your doctor can advise you on this.  You can space out vaccinations or find ones that may have less of an impact on your child, if you like.  I do not believe vaccines cause autism.
  
• Auditory integration therapy, vision therapy, etc.  We spent tens of thousands on these treatments.  It is very easy to perceive initial improvement, but I do not think it is actually substantiated.
• ABA therapy or VB therapy, including the book "Let Me Hear Your Voice."   There are good things about both therapies, like reverse chaining and teaching some basic skills and play skills, but these methods did not necessarily originate with ABA or VB. In my experience, these expensive therapies do not address the core issues of autism -- improvement in MEANINGFUL communication, social interactions, and play skills.  In some ways, I think these therapies make children MORE autistic-like.  I know I am bucking the trend here, but I have to say it.  You have to ask yourself "what is progress."
• Insistence on eye-contact.  I would just fire any therapist or teacher who insists on eye contact.  Most children with autism hate it, and they're biologically wired to avoid it. 

Please do not take my word for it.  Consult MULTIPLE doctors, parents, therapists, and teachers, and always, always check references!