My Love-Hate Relationships
Queen Maurice
One of the first books I ever read about autism that didn’t
leave me a depressed sobbing mess was Let Me Hear Your Voice by Catherine
Maurice. It is the story of a mother
who recovered not one, but two children from autism. I had yet to realize Autism’s Lesson Number One (never stereotype in autism) and so I was
utterly convinced that my child couldn’t be autistic because he was so far
removed from the descriptions Maurice made about her daughter Anne-Marie. If that
was autism, then Lukas was not
autistic. Anne-Marie didn’t seem to
care. Anne-Marie didn’t seem to
recognize her own mother. That wasn’t
my child who jumped up and down when he saw me.
My first reading of Catherine Maurice’s book left me with a
sense of relief because it pushed my sense of denial even further. On the other
hand, it did enter the notion that
autism wasn’t as horrific as I believed because this woman recovered two of her
children (a loaded term and one that I will address in another essay.) This was something I never heard of before.
I put Catherine Maurice’s book on a shelf and pretty much
forgot about her. I kept in my
mind both the book and the fact that
Maurice used Applied Behavior Analysis (ABA) to recover her children . I occasionally mentioned it on a few
internet mailing lists I was on. One
particular list was for parents who believed that their children had a
Hyperlexic learning style. Any real
mention of ABA was met with silence and a round of emails stating that those
children were autistic and that the Hyperlexic child was not. Others stated that ABA was only to be used
on those severe children. I
felt as though using ABA would mean that my child was severe. Twisted logic but I wanted nothing to do
with ABA because it would mean that Lukas was really defective.
I revisited Catherine Maurice’s book the week after we
received an official diagnosis. That is
when I began to hate the book. I reread
the many passages and began to feel anger.
Of course she was able to get an early diagnosis. Her children had severe issues at 2 and 3!
What about parents like me? I let my
own guilt take hold of me and I began to imagine that Catherine Maurice was
looking directly at me and gloating
that she got early intervention for her children and I didn’t. How could I? Two pediatricians, one
psychologist and speech therapist, and
one ENT all said that this child was not autistic. Family members all scoffed
at the idea. This child was
affectionate, had words that were not
just meaningless echolalia, and was really a bright child. How could this child have been diagnosed at
two?
In the first few weeks after Lukas’ diagnosis, we were naïve
and tended to blab our child’s diagnosis to everyone. It was still a shock to us. A neighbour told us that when she was in college, she had a
roommate who worked as an ABA therapist.
She also told me that a friend at her church has an older child with
autism and that they use ABA with him.
She gave my number to her fellow parishioner, Merideth. The very next
day this Merideth called me and invited my husband and I to her house. (AUTISMS LESSON NUMBER 4: Parents,
especially mothers, are the driving force behind appropriate interventions for
their children.)
When we arrived at Merideth’s
house, she introduced her children to us.
She had three boys. Her two NT
boys made very quick hellos and ran out of the room. Her ASD child stopped, looked at me and asked who I was. I told him I was Antonia. “oh” he said and ran out of the room.
Merideth popped a tape into her
VCR. It was called Behavioral
Intervention for Children with Autism It explained the original Lovaas study that showed
that children who received 40hrs a week of ABA could achieve normal
functioning. Normal Functioning, as explained by this tape, meant that they
were found to be normal by independent evaluators in the area of social,
cognitive, and language. Nine of the
children in this group made that category.
Others were able to be moved into classes for children with language
delays and impairments as opposed to classes for the mentally retarded. Two children stayed in classes for the
mentally retarded. The tape
started with Chris. He was one of the children that showed the
slowest progress. I looked at my
husband and wanted to cry. If this was
autism, then there was no way our child
was autistic. Then the tape moved on
another child who had some learning disabilities but seemed to be a wonderfully
pleasant, happy little child. It struck me though that the mother didn’t seem
to think he would graduate from high school but she was okay with that because
he could work in her husbands business.
Then came the best outcome children. Two were in high school and talking
about their plans for college or about how they like girls. : It made an impression on me. One was placed
in classes for gifted and talented and wanted to join the air force like his
father.
As we left there house, Merideth turned to me and said that God had
blessed them. She told me that she was
really lucky and that her child could have been so much worse off. God had been kind. Her husband, John said that when your child
is diagnosed, you feel your dreams crashing down around you but after a
while, you will find yourself building
new ones.
I walked out into the night with
my husband. As soon as we were out of
earshot I turned and looked at him.
“What a bunch of nuts. God has been kind? Their child has autism
for Christ’s’ sake. They must take too much Prozac.”
My husband asked if I heard the
descriptions of the children in the tape.
The parents had described their young, two year old children as
withdrawn. One parent thought her child was deaf and blind. These children were obviously autistic. One parent said that her child body rocked
for hours. This tape sealed our belief that our child was not autistic.
Fortunately, we took a rather
practical approach to our denial. We would
begin to set up better services for our child, even though we didn’t believe
that he was really autistic. I would
start an ABA program for my child who didn’t have autism.
I reread Catherine Maurice’s
book. She had hired a graduate student
and a speech therapist for about 13 hours a week. I calculated the going rate
for a lead therapist who had ABA experience. I realized that this wasn’t going
to work. There was no way we could
afford to privately pay 10hrs a week of ABA therapy. I knew that the current, school district speech therapist wasn’t
cutting it. I felt like she was completely clueless and that the sessions ,
which she would not allow me to observe, were a complete waste of time. I saw no progress coming from her. I don’t believe she had any real experience
working with language disorders. I am
sure she worked well with children who had general language delays and
articulation errors. What about
bilingual children with large vocabularies but problems syntax errors,
pragmatic problems, and an undiagnosed language problem of unknown origin? I thought that Lukas would make better
progress if he went to a private speech and language pathologist with a masters
degree. I called my insurance company
to find out how much of speech therapy would be covered. It is then that I learned a new lesson in
Autism: AUTISMS LESSON NUMBER 5: there is large scale discrimination occurring
against those with autism. It is
occurring not just in schools but in the medical community as well. Insurance companies want the school
districts to pay for therapies. They
say that it is an education issue rather than a medical issue. School districts do not care about
recovering children or best outcomes.
They hide behind the “we don’t have to give you a Mercedes, we only have to give you a ford” analogy to
justify using ineffective methods that are cheap. If a child had cancer,
this argument wouldn’t fly. No
doctor would come in and say “well, we don’t have to give you
chemotherapy. We just have to show that
we are attempting to treat you. Since
you have just a little bit of cancer, we are going to turn you over to a school
teacher who will give you a painkiller and we will meet again in a year to
review how you are doing.” I realized
that the very same agencies that are responsible for helping me have a conflict
of interest: money.
Our insurance company, like many
others across the United States, had a specific autism exclusion policy. They would flat out refuse to pay for
anything that was remotely autism related.
The State Blue Cross Blue Shield representative informed me that autism
was a mental disorder and that they don’t cover that. She also told me that the only way to cover speech therapy was
for him to have been born onto the policy and had to have had damage done
during the birth. Neither of these
applied to my child. I was
shocked. They would pay for Viagra but
wouldn’t pay to help my child learn to communicate. Worse than that, it was the first time that someone told me
that my son was mentally disturbed.
I called several private speech
therapists and the going rate in our area was between eighty dollars and 100
dollars an hour. If I did the Maurice
model, I would have to pay 300 dollars a week for speech. The diagnosing physician had also told me
that she recommended Occupational Therapy and our case worker (who subsequently
disappeared from our lives after this)
set up an appointment for us at a local agency. Since we did not have Medicaid coverage and
our insurance company was playing the “pre-existing condition card” claiming
that his condition was present before we started coverage with them, I realized that we were to pay 80 dollars a
week for occupational therapy. I
tallied the going rate of fifteen dollars an hour for a lead therapist in ABA
at 150 dollars a week. I was going to
need to pay 530.00 a week for therapy.
How did Catherine Maurice do this?
Why didn’t she warn me that this would happen?
I flipped through her book
again. There was no mention of it. There was mention of a housekeeper. There was mention of flying to France. I began to hate her even more. How dare she bring me the only intervention
with credible scientific outcomes and then fail to mention that I would never
be able to afford it.
I then turned where many parents
find themselves going when agencies around them fail to give honest, useful
information- THE INTERNET. I can now hear the collective groan of a few
professionals. She is an internet
mom. The Internet was were I began
finding information that was applicable to my very real life. I posted to the Me-list (a
list for parents and therapists running ABA programs). I asked how these parents funded their
programs. Little did I know that this is a common question posted. Most emails I received told me that hell
would freeze over before I received funding.
Most told me that I could try to
ask but that a lawyer would be needed.
One asked what state I lived in because school districts in North
Carolina will not allow ABA therapy because another methodology, called TEACCH which was “the choice” of
districts. It was used because it was cheaper on a year to year basis and
because its creators worked in North Carolina.
One woman wrote to me about her experience with trying to get ABA
covered in North Carolina. She wrote
“TEACCH owns North Carolina. I
was told that I had to accept the TEACCH method or receive no services even
though our ABA program showed that he progressed more in three months of
homebased ABA than he did in an entire year of a TEACCH classroom. Your only hope will be an attorney.”
Great. Not only did I need 530 dollars a week to pay for therapy but I
need a few thousand to hire an attorney in order to try and get our school
district to pay. When I mentioned to
the public school’s speech therapist that we were going to try ABA she told me
that there was no way the district would pay for that because they didn’t have
any money.
I got on my computer and within a
half hour, I became Amazon’s (an
online book retailer) biggest customer. One book I bought was Behavioral
Intervention for Children with Autism by Catherine Maurice. It had some ABA specific information in it.
I decided not to buy the Me-book by Ivar Lovaas
because its publishing date was so old.
I wondered why he hadn’t updated his book. I started doing therapy on my own while setting up finding a
consultant and looking for a few good therapists. We had to borrow money from a family member in order to pay our
attorney, start the therapy, get the supplies, and work to help our child. Of course, looking back, my technique was very bad! I had no idea what I was doing or what it meant
to use the principals of ABA in teaching a child. I assumed it was just a matter of delivering a command, getting a response, and delivering an
M&M. Isn’t that all that Brigette
Taylor did for Maurice’s children? I
later realized that there was more to it than this.
I also did something incredibly
naïve. Most special education lawyers
would cringe. I wrote a proposal to
our school district outlining a request for ABA. We mailed it and waited a response. I decided that I did not want to waste time in IEP meetings. IEP stands for Individualized Education
Plan. It is suppose to be a team effort
between parents and the professionals within a school district. An IEP meeting
is where a parent and the district meet to set up services, create educational
goals, and discuss what the child needs and what progress has been made in the
past. The more I thought about
it, the more I realized that this was
all a big lie. This is not a team
effort. THEY (the district) has
the power. They have the money and the
services. The parent simply has the
child who is in need. The parent needs. The district has. They are the masters. I
felt like Oliver twist: Please Sir’
might I have some more?
In our state, Medicaid pays for almost 70% of an ABA program provided
the LEA (Lead Educational Authority ie the school district) agrees to bill for
it. Certain states have a Medicaid
program that helps in the cost of ABA. Many times, school district receive
extra funding through Medicaid. It was
hard to believe that 70% of the funding of our program was out there, but I
couldn’t get to it unless my school district agreed. Our state set it up so that Ivar Lovaas himself would not be
qualified to bill Medicaid for ABA services.
I knew that I had a few things on the school district. In the course of a few months, I found out that the school district’s
speech therapist had an IEP on our child that I didn’t know existed. Very ironic considering I spent months
needling her on what she was doing with my child and I asked specifically what
she was working on and whether or not I could observe one of her sessions. She told me that I was not allowed to. I knew all this was illegal. I also requested an evaluation for my child
and months passed. The district didn’t
process that request. They would later claim that I told them that the
professionals we saw while living abroad had already said that he was autistic
but that we didn’t believe that to be true.
Of course, this is quite the opposite of what I said. I had actually told them that the
professionals we saw abroad had clearly stated he wasn’t autistic but we
weren’t so sure. Luckily, I had moved
to set up a private evaluation, which we
paid for ourselves. The case
worker from the diagnosing clinic left a message with the school psychologist
that Lukas needed occupational therapy.
By the time of our ABA proposal,
they had no set up OT services.
Almost three months had passed between the request and our ABA
proposal. Districts move at their own
pace and they provide only what they have to legally. I knew that there were procedural errors on the district’s
part. An attorney we brought in after
submitting the proposal told us that it was those procedural errors that would
most likely get us ABA- not the
scientific merits of ABA itself.
Since we asked our district for
ABA, they had to do their own evaluations of our child. The district suddenly became very careful in
making sure that it dotted all I’s and crossed all T’s. They claimed to have no record that Lukas
was even autistic despite the fact that I clearly told the speech therapist
about our private evaluation and signed release forms for the district to
obtain copies of his evaluation and despite the fact they already had said that
I told them that he was evaluated for autism.
The caseworker from the clinic also tried contacting the school psychologist
on two different occasions. She claims that she clearly stated his recent
diagnosis. Once, when I mentioned
Hyperlexia as a possibility with Lukas, I was told by the speech therapist that
Lukas was “as autistic as the day was long.”
Now, the district was suddenly claiming to have no indication that Lukas
was autistic. They suddenly became worried about timelines. It was a painful time to watch him being
evaluated while all these adults looked at him and scribbled down their
notes. They saw him as defective. They saw me as a know –it-all who should be
smart enough to leave him to the experts (them). The district called us to set up Occupational Therapy. They wanted an IEP to start summer speech
services and occupational therapy services.
I told them that we couldn’t meet within the time line they suggested
because I wanted our ABA specialist and our attorney to attend the
meeting.
They told me that this IEP wasn’t
about our Lovaas proposal but about setting up services. The school
Psychologist called me on the
phone because she was concerned that we had not immediately responded to their
request for an IEP. I told her that
there could be no IEP meeting until I found out the dates that our team members
could meet and until the district sent us copies of their evaluations that they
did on Lukas. The school psychologist
told me that she was going to hand the phone over to the secretary and she
wanted me to repeat every word I just said.
I knew from that point that the district was spooked. Little did I know that I should have made
more careful notes about all meetings and phone conversations with the
district. They would later claim that I
was refusing OT services as opposed to not being able to meet on the date they
requested.
Later, the special education director would suggest that I just
misunderstood what the school psychologist was asking and that she could
understand how I could be confused since I had twins and wasn’t familiar with
the vocabulary of special education.
Now it was being implied that I was just a confused mother. It would be some time before I would learn
that the district would never admit to making any mistakes or violating any
laws. The district felt itself
infallible.
I attended all observations of Lukas. I made my own notes. I am very glad that I did this despite the
hardship it presented. My husband had to take time off work or we had to spend
more money for babysitters. By making
my own observations, I was able to have my own documentation. I didn’t have to rely on reports by district
personnel with an conflict of interest.
The one that bothered me the most was the home observation. The speech therapist entered our home and
did a twenty-minute observation of Lukas.
I was shocked when I read the write up of her observation. She wrote things like “whatever Lukas
requested was immediately granted by his mother.” I was angered. She did
not state what he requested or how many times he requested something or whether
or not it was appropriate that the requests were met. Luckily, I knew that he had only requested four things during
this twenty minute period: snack (it was our household snack time), a spoon (I
failed to give him one to eat his cereal), a train (he was playing with trains)
and a rolling pin (he was using play
dough to pretend that his trains were getting stuck in mud). I knew what her comments were meant to
imply. It was an attack on my
parenting. The speech therapist had
behavioral issues with Lukas. I had
less behavioral issues with Lukas than she did. Rather than realize that I had better reinforcement than she
did, she decided that it was because I
caved into his demands. I remembered
that Catherine Maurice wrote about how an expert had decided that Maurice didn’t
create a bond with Anne-Marie and that was the cause of the child’s
autism. Bettleheim’s refrigerator
mother theory wasn’t dead. It was being used to cover up the incompetence of
experts. It was the first time I felt
like I shared anything with Maurice.
My husband and I sat down and
started talking what-ifs. What if they
don’t fund us? We will do ABA
ourselves. What if he isn’t really
autistic? This can’t hurt him and
can only help him. What if we
can’t find a consultant who will take us since he is already four and most
places have year long waiting lists? We
will carry on ourselves.
The tension in our house
increased. My husband had just started
a new job. We had twin infants. We had a child who needed real help. The very agencies that were supposed to help
us added stress and did little to help us.
The diagnosing physician couldn’t be reached by phone. In fact, from the day I walked out of her
office, I was never able to contact her
again despite trying on numerous occasions.
The school district was slow to respond to our requests. The caseworker from the private clinic was
never in the office. The early
interventionists sent to our home had no experience with autism or ABA and
while well meaning and friendly, they
just did not know what they were doing or how to tell exactly what Lukas
needed.
Why didn’t Maurice tell me about
this? Why did she seem to have no
stress? She could dabble in alternative
therapies and leave her children with the housekeeper as she took Anne-Marie to
preschool. I had to pray that my twins
would nap at the same time so that I could get some therapy hours in. I considered selling off some possessions
to help pay for additional therapists.
Part of me began to fear that my child wouldn’t be okay because he
wasn’t as bad off as the children in the original Lovaas study or Maurice’s
daughter. What if he didn’t really have
autism and what was causing his language delays was something different , which means that he had no chance at
recovering? I actually began to wish we
had clearer signs when he was two.
Maurice went from an interesting hopeful story about autism to a
representation of all I couldn’t have:
Early intervention, a good therapist, and household help to keep the house running
while I was helping Lukas.
I put Catherine Maurice back on
the shelf and didn’t take her down again for another couple of years.
As I became an old-timer
who had years of experience dealing with the system and ABA, I started having parents call me for advice. I never suggested reading Catherine Maurice
despite the fact that our consultants had her book on their suggested reading
list. In fact, for new parents, I
rarely suggest it. I felt like it gave
an unrealistic view of autism and ABA. It appeared that Maurice recovered two
of her children without a struggle: just
go out and get a trained therapist and you will have a perfectly recovered
child with just ten hours a week of ABA.
Even though she doesn’t say
that this is an easy process, I didn’t
feel her struggle. I didn’t get the
impression that there were moments where she wanted to pull her hair out and
scream. If she was going to take
Anne-Marie to preschool, she could just leave her other children with the
nanny. She didn’t think about selling
her wedding dress to get in a week’s worth of therapy. I think this is the reason I tended to
suggest this book to relatives of children with autism, professionals just starting to work with
children who autism, and teachers as opposed to parents.
I don’t know why I was so
hard on Maurice. When I read Lynn
Hamilton’s book, Facing Autism, I didn’t have the same reaction. Hamilton also didn’t appear to face the
funding struggle. The stress and
financial issues didn’t appear in her book either and yet I found myself
recommending Hamilton’s book to any and everyone. Perhaps it is because Hamilton was more honest in her book. She mentioned the family whose child would
not recover. She also mentioned issues
that I could identify with such as medical issues. I think it annoyed me that Maurice had two children who appeared
to have normal bowels. Maurice wasn’t
reduced to a poop obsessed mother counting the number of times her child had
diarrhea or trying desperately to convince her daughter that the suppository
was for her own good. Poop and Maurice
didn’t seem to go together. I just
couldn’t imagine Maurice being concerned about fecal matter. I bet she wore
nice clothes and had good hair. I was a broke poopy mom who didn’t have time to
shower because she had to breastfeed her infants, read an email on teaching
pronouns, and prepare for a an upcoming IEP that would bring in attorneys.
I finally mellowed my
judgmental opinion about Maurice a few years later. I realized that we had something
in common- the profound need to protect
our children’s privacy. Maurice wrote
under a pen name for a reason. By
writing a book that told other parents that some children can recover from
autism, she opened up a flood of
negative response. I admit that when I
had doubts about my own child’s future,
I seethed over Maurice’s proclamation that she recovered not one, but
two children: Where are these so
called recovered children? Do they have
friends? Do they have theory of
mind? Are they really recovered? If
they are, then why doesn’t she show them?
Why does she hide them? What does she have to hide?
No wonder she changed their
names for her book. She writes under a pen name for a reason. If I had met her children, I would have put them under a
microscope. I would have watched very
closely for any sign of a disorder. I
would have wrote down any strange noise they made, strange movement, strange
thought. If they were not the most
popular in the class, I would have deemed them a failure. If they were not the most brilliant, would
have deemed them defective. If they
were not shining examples of the Mythical Neurotypical Child, I would have immediately pointed out all
their defects and proclaimed Maurice a fraud.
These would not have been children to me but objects to view and
determine the value of.
I see this now with
Lukas. Those that know the diagnosis
are constantly watching and searching for the signs of autism. The child who sat next to Lukas in
kindergarten was allowed to rub his head on the carpet and bark like a
dog. That was just being funny- a class
clown. .If Lukas did that, he would be
engaging in self-stimulatory behaviors and inappropriate peer relations. The child who lived next door could obsess
over geography and refuse to do any pretend play unless it involved pretending
to be a Christian crusader. He was
Gifted and Talented after all. If Lukas did that, he would be seen as having limited interests and being rigid.
Lukas has to be more normal and more perfect than an average child. Lukas has to be the mythical NT child
because there is a scarlet A on his forehead.
We soon learned that we had
to protect our child from these people if he had even a remote chance of being
accepted for who he was. I myself would be just as guilty. I don’t know if I could see another child
with autism and not find myself looking for all the signs. I think that I would watch a child with
autism closer and scrutinize his every move.
I have seen people do that with Lukas.
I know they would do that to the Maurice children.
A relative once asked a
special education teacher she knew about Lovaas and the teacher sent an email
explaining what she knew. This email
was forwarded on to me. It saddened
me. The teacher recommended Maurice’s
book but also said that most school districts could never do ABA because it
required them to slap a child when they weren’t paying attention or got a wrong
answer. It was obvious that this woman
didn’t even read Maurice’s book closely. If she had, she would have read that the use of physical aversives are not
used like this anymore and hasn’t been used in many years.
Some of the more extreme
sounding measures were used on children who were self-injurious. I think that if I saw my child banging her
head against a counter so hard that blood was spewing from her head, I might try something like that too. The fact is, positive reinforcement is seen as the primary tool in ABA. We have never slapped our child. We do not believe in it. Our consultant has never suggested it and
she trained under Dr. Lovaas himself.
Did we use aversives? Yes. Aversive are anything that is undesirable- from saying “no” to cost response systems
like taking away computer and T.V. time.
People get caught up in language and fail to look at the actual method.
Maurice’s name was being
linked to thigh slapping and abuse, an exact issue she addressed in her
book. It is easy to see why Maurice
chose to hide her children’s identities.
I have learned to sympathize
with Maurice and to realize that by putting her story out, she opened herself to criticism. I have seen
her vilified by various groups because she had the misfortune to recover two
children. How dare someone rich do this.
How dare someone even suggest
recovery is possible. How dare it be
suggested that the future isn’t always bleak.
How dare a parent take charge. I think that some want to believe that
she must be lying because the idea of recovery threatens the their profession
or threatens their own parenting choices.
I think some reject Maurice because they don’t want to feel like their
failed their own child. If their child
doesn’t recover, does that mean that they are losers? It is easier to be hostile towards Maurice than accept that you
are not going to have the same outcome.
According to the Lovaas study,
half will not reach “recovery”.
Can a parent accept that or will they lash out at those who have
recovered children? Can a parent who did not choose ABA feel defensive because
their child also does not recover? It
is easier to blame others than accept what is.
Some children will not recover,
despite the method chosen.
I often recall the night I
called that I called Meredith a nut.
It took me about three years to realize that she was right. I don’t know where we will be another three
years from now but I do know this:
God has blessed us. There is hope.
© 2002 Antonia Christopher
