The short answer is “very”.

The long answer is, well, long

Note – I use ASD to mean “autism spectrum disorder”.

Let’s start with therapy.  I estimate the average ASD child needs Speech/Language therapy for about 5 years and Occupational Therapy for about 3 years.  That is 16 “therapy years”.  This is about $300K to the family or insurance.  The cost to public schools is about $4K per year for 13 years.  Cost in babysitters because they can’t go to a regular daycare is about $5K to 26K per year needed, perhaps for average of 10 years.  Summer care would add another $5K.  Increased medical care due to specialists, studies like EEGs, and lab work is about $3K for 18 years.  Special programs (social groups, special schools, special camps, etc.) maybe up to $30,000 per child for 10 years.   If the family has Medicaid, of course it is less for the family, but still time intensive.  I’m not even accounting for ABA or other specialized interventions that are purely out of pocket.  Most families are middle class and this presents a huge financial burden.  Then many families have a full time parent because of the time demands, leading to lost income – maybe about $40K for 10 years.  It all comes out of everyone’s pockets – through taxes, insurance premiums, or direct pay.  Direct costs for the average family – close to $1 million excess cost to get the average ASD child to 18 years.   There are also lost income taxes to the state and federal governments for the spouse who is not employed.  Theses are all, of course, my gross estimate.  While it may sound inflated to some, I think it represents most my families.   Some families have more than one child on the spectrum, and many have other children with other developmental disorders (ADHD, learning disabilities, language delays, anxiety disorders, mood disorders, etc.) leading to even more costs.  

In our family’s case, my husband stopped being employed when our son was 3 because of his needs.  He had a great deal of therapy over the years – speech, occupational, social skills, and summer programs.  He went to a specialized school for “bright children who learn differently” for 9 years.  Up to now, I estimate he has cost us over $1.7 million, plus the lost tax revenues to the government.  This is not all out of pocket, but the most expensive thing is the loss of my husband’s income – he was an electrical engineer in the semiconductor industry.  

What is the cost if this money is not spent?  All this intervention can mean the difference between an adult who can be an employed member of society or a disabled adult Dependent on the state and federal governments.  The cost of that for 45 years can be from $1.3 million (residential care) to $2.2 million (jail, intense supported living, psychiatric care).  The vast majority of my patients have the potential to be independent, employed adults, instead of disabled, dependent adults.  Notice I assume a lifespan of only 65.  If that is extended to 80, then the costs range from $1.7 to $3 million, each.  Not to mention the lost contributions (and tax dollars) of this very special population.

So for each dollar spent on a child with an ASD, it saves society about $6.  Yet when I remember the 3 year old who could not talk to me and I see my wonderful 18 year old who is ready to start college, every penny was worth it.  I shudder to think about how he would have ended up if he had been born 30 years earlier, when he would have been dismissed as mentally retarded and we would have been urged to institutionalize him (the advice to Temple Grandin’s mother).

If we assume 1% of the pediatric population has an ASD, they will cost $3 BILLION to society without intervention.    And I’ll bet this is a low estimate.  The next time someone complains about how your child costs so much to society, remember these numbers!

What do people mean when they refer to autism as a “spectrum”?  All children with these diagnoses – autism, Asperger Syndrome, PDDNOS, High Functioning Autism – have the same pattern of strengths and weaknesses.

Social – the social difficulty is at the heart any autism spectrum disorder.  At it’s most severe, a child can be completely cut off from from all people.  This is very rare.  I have only seen this twice in my 21 years in pediatrics.  Even severely autistic children are bonded with their parents, and usually siblings.  Most cuddle and show affection.  Many are not interested in playing with peers, but do well with older kids (who accommodate them) and younger kids (who are more likely at their social and emotional level).  With intervention – OT, Speech, Floortime – their ability to connect with peers improves.  They usually observe for awhile before interacting.   Some never become very social, and always keep to themselves.  Some become very aware of their differences and desperately want friends and close relationships, but they don’t know how to do it. Others “crack the code” and develop close friends.   So the social difficulty has its own spectrum – from completely cut off and unaware of people to limited interactions to content to be alone to socially able, but inept.  Some develop mature adult relationships and successfully navigate at work, home and community.  Since the social deficit is at the heart of autism, the last group of people can no longer be diagnosed with an autism spectrum disorder.

Communication – If you are not aware of people as people, then why would you communicate?  Usually, the communication deficits are due to the social deficits.  At it’s worst, a person can be nonverbal and use no signs or alternative communication devices to communicate.  When  they take an adult’s hand to do something, like open a door, it is because they see the hand as the “thing” that does the task, instead of the person who helps them.  When language emerges, it often begins with words related to their interests (ie “Train”) instead of people.   (Brian did not use his own name or his sister’s name until he was almost 4, although he said “muh” and “duh” for Mom and Dad at 12 months – but he could name all the Thomas trains).  As language emerges, they echo others often, either immediately or later.  They seem to memorize scripts easily, sometimes an entire movie in one session, but they can’t use the language they have well.  When they echo immediately, it usually means they did not understand, and you need fewer words and more pictures (show him, don’t tell him).  As language improves, they have a lot of spontaneous language, but it is very concrete and “in the moment”  They can get their needs met and answer concrete questions, but not use abstract language.  Over time and with intense speech and language therapy, the highest functioning develop conversation and narrative skills.  Brian can have very good conversations and his narrative skills are excellent.  It is hard to say he has a language problem any more, but he still has work to do on social communication.

Restrictive interests can range from only one object of interest (a hanger, a stick) held all day long, to a category of toys  (trains, dinosaurs) to an all consuming interest (weather, a person like Michael Jackson) where it is all they talk about and they learn all the factual information they can about it.  As they become more interested in people and their language and communication improves, they are more able to shift topics and have real conversations about other topics. This trait worsens with anxiety, and when they return to topics or toys from earlier years, their anxiety is heightened.

Sensory problems are not an official part of the definition of the autism spectrum, but it is likely to be included in the DSM-V, when it is published.  The worse their sensory problems, the more handicapped they are in different environments.  They can be severe enough to make a classroom, church, and restaurants intolerable.  It can lead to homebound education or homeschooling.   WHen mild, they have no limits on where they can go and what they can do.  Brian’s issues were severe, but greatly improved with OT.  Still, he and I can not go to Sam’s Club because of the odor from the fertilizers, which are right by the entrance.  

I hope this helps to understand what we mean by a “spectrum” where any part can range from very severe to minimal.  Therapy helps – the more the better and the younger the better.  Brian started with severe communication and sensory issues, moderately restricted interests, and moderate social impairment.  Now, his social difficulty is minimal, his interests have generalized, his sensory problems are manageable, and very good communication skills.  After 15 years of interventions, he is so close to being ready to launch into the world.  

Check this out for a free iPad for people 22 or younger for a free iPad.  There are countless apps that are cheap or free that are good for our kids.  Don’t forget to turn off all electronics (anything with a battery or plug or screen) an hour or more before bedtime – the light inhibits your natural melatonin release, and make it hard to go to sleep.  I know if I read from my iPad, it takes hours to go to sleep.  If I read from a book, it’s easy.  Also exciting games, shows, and commercials can rev a child up enough to interfere with sleep too!

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This year, Independence Day has many meanings.   One is having the freedom and independence to live where I want to live and do the work I want to do.  Another is having an 18 year old son with Asperger Syndrome who is far more independent than I could foresee back in the early days when he couldn’t talk and couldn’t play with other kids.  A few weeks ago, we went to a minor league baseball game, and watched the fireworks afterward.  A show that would have led to hysterics even a few years ago was thoroughly enjoyed.  He is now nearly independent of his sensory problems, which used to keep him from full inclusion.

Through the years we have been accused of seeing our son as “more handicapped than he is” and “expecting too much from him”.  I see that as success.  I tell families constantly that they have to walk a fine line between pushing the envelope and  not pushing enough.  The worst outcomes are in families that do not push enough.  Kids will live up to or down to their expectations.  Without pushing the envelope, the child will make minimal progress and be more dependent on others as adults.  These children are also more irritating to others and they expect everyone to take care of their needs.  So the downside of not pushing them is over-dependence and more challenging behaviors .  When a child is pushed beyond their abilities, they respond with behavior.  ”Behavior is Communication”.  They convey the concept of “This is beyond my ability” through tantrums and meltdowns.  If overly challenged constantly, the tantrums and meltdowns become more frequent.   The trick is to find the fine line between them, and stay near it.

Until he was 12, we never went anywhere with Brian without 2 cars.  One parent stayed as long as Brian could, and then took him home.  The other stayed with our daughter until she was ready to leave.  We tried to take him to the movie “Mulan”.  As soon as the scary music started, before the Hun came out of the snow, Brian clearly and loudly said “GET ME OUT OF HERE”.  We immediately left.  There we pushed too hard, but we left as soon he indicated he could not handle it.  Some days you push too hard, and others not enough.  As long as you are accused of both being “overprotective” and  ”expecting too much”, you are probably doing just fine.