FREEDOM OK.NET

The flip side of “diagnosis” is “treatment”. Your child’s autistic profile guides treatment.

For example, say your child engages in some lining up of items and repetitive behaviors but the BIG problem is the child’s lack of social connection. That’s where you focus — work most on the biggest problem. If so, work on improving your child’s social connection to same age peers.

Start with your pediatrician. Wondering why your child does not respond to his or her name when called? Make sure that your child can hear normally. Ask your MD if he uses check lists for autistic spectrum disorders. If he does not, that is important information. You will have to go elsewhere to get up to date info.

Get a basic checkup. If your child has seizures a neurologist is the next MD to see. Your pediatrician can refer you to a neurologist as needed.

resources for children with autism in California:

In California, children over age 3 with a diagnosis of autism are eligible for regional center services. What does that mean? It can mean Respite Services so that the parents get some needed time to themselves and their autistic child is cared for appropriately. Taking a break is vital. Use it for a nap. Use it to put spice back in your relationship.

In California, in terms of education children over 3 are served by their local school district. That is where you start. Not necessarily where you end up. Note that the regional center is the provider/payee of last resort. What that means is that if the “generic” source — i.e., the public school district — cannot provide a necessary resource then the regional center can be asked to and will pay for it. What that translates into is that the parents of children with autism have a funding source to for assistance if other appropriate resources fail. Yes there is a budget crises in California. Yes the regional center budgets have been cut too. Just remember to be an effective advocate for YOUR child.

So say a CA school district has only one class for children with autism and that class is totally inappropriate for your child with autism (as the child too high functioning for that class). Is there a private school in the area that does offer an appropriate education for your autistic child? Then seek through the IEP process with a regional center service coordinator advocate assisting that your child attend the school that is appropriate. And seek funding through the regional center as necessary.

Recently I found this information which is 14 years old yet still timely advise: In essence, the advise given to John Wobus 14 years ago (his child was six and recently diagnosed with autism) was the following: trust your instincts. Get as much info as you can without going overboard. Take care of your self and spouse and family. Have fun and do normal stuff. Get connected to other parents with children who have autism.

One book a number of parents recommended back then highly recommended were: Let Me Hear Your Voice by Katherine Maurice

written by John Wobus in 1996 www.autism-resources.com
Advice to parents who discover their child is autistic
——————————————————————————–

For the benefit of parents just finding out that their son or daughter is autistic, I posed the following question to the AUTISM mailing list:

I just discovered my son is autistic. What should I do?

This memo includes all the answers I received to the above question. First is the message I sent to the net, followed by the replies that I received. Thanks very much to all who replied and gave me permission to include their answers in this memo.

John Wobus
Syracuse
2/14/96

——————————————————————————–
My question:
Date: Tue, 07 Feb 1995 12:50:23 -0500
To: autism@sjuvm.stjohns.edu
From: “John M. Wobus” <...>
Message-Id: <9502071750.AA01501@spider.syr.edu>
Subject: I just discovered my son is autistic. What should I do?

Hello everybody,

I posed that question to represent the occasional similar queries that
I see on this list. I’d like to devote a section of the “Frequently
Asked Questions” memo to such questions and I’m soliciting input.
Right now the memo more or less catalogs things (books, treatments,
symptoms) and in particular offers so many books as to be less than
useful to someone who just found out they need to deal with this. I
might suggest:

-Do you know an excellent “first book” for someone to read who
has just discovered that they will have some responsibility
for someone with autism?

-Who would you take your autistic son or daughter to see first?
To get things started?

-What to watch out for?

-Other ideas? Best video to find and watch? Organization to
contact or join? Other sources of information?

Naturally, in-depth advice would depend a lot on the individual and
a simple memo can’t go into lots of detail. Hopefully, it can give
people a thread to pick up on that will quickly lead them to what they
need to know first and eventually lead them to as much information as
exists.

I will watch this thread for ideas or you can mail them to me at
<...>. I’ll collate the ideas and incorporate them, e.g. if
there is a “consensus” first book to read, I’ll name that, otherwise
the ones that seem most popular. Thanks for any input you can offer.

John Wobus
Syracuse University Computing & Media Services

——————————————————————————–
The answers I received:
Date: Tue, 7 Feb 1995 13:17:44 -0500
From: CVandergrient@gis.shl.com (Casey van der Grient)
Message-Id: <9502071817.AA08867@panther.gis.shl.com>
Subject: Re: I just discovered my son is autistic. What should I do?

Hello John,

As a parent/advocate and involved here at the chapter level I can pass on
the personal observations:

1) Speed is of the essence, contact the nearest good early intervention
program, no doubt they have a waiting list.
2) Contact the local chapter of ASA and start talking to the parents. They
know more than anyone the lay of the land. Professionals are often
restricted from being more honest than they might want to be.
3) Start a crash program of self education. Most parents must become expert
at the nuances of early intervention. There is so much information now but
start as subscribers to the advocate, ARRI and couple books that we found
really helpful were Let me hear your voice, and A parents Guide, although
this is becoming a little dated.
4) Solicit help from friends and family. Like diamonds Autism is forever so
the sooner you surround yourself with a support system the better you’ll be
able to deal with the rocky road ahead. This will help them understand what
it is to have autism in their life.
5) As soon as you can cope start advocating in the community. Real change
only comes about when people make it to happen.
6) Never, ever stop.

Thats it, hope it helps.

Regards,

Casey

Real Life: Casey van der Grient SHL Geographic Information Systems
Internet: cvandergrient@gis.shl.com 50 O’Connor Street, Suite 501
VOICE: 613-236-9734 x 1359 Ottawa, Ontario
FAX: 613-567-5433 K1P 6L2

——————————————————————————–
Date: Tue, 07 Feb 1995 13:01 -0800 (PST)
From: RSCSWS@ncal.kaiperm.org
Subject: Your son

Dear John,

How old is your son? Erin (6YO daughter) was diagnosed at 3 yr. Usually this
happens because at 3 yrs the kids transition out of a preschool type of
placement and they need a diagnosis. No pediatrician is qualified to diagnose
autism (and luckily, none tried). We got referred to the local specialist.
Make sure that the PhD you use has LOTS of experience WITH autistic kids,
not just ‘book’ learning. Make sure that the tester knows how to test your
son. If it looks like an ineffectual test, it is. Many PhD and assistants
do not know how to test autistic kids. Makes a big difference in what kind
of report they write up for the school district which translates into what
kind of services you get. Make sure they make a recommendation for school
placement – teacher/student ratio, speech/OT, how long a day… You also need
a neurologist (experienced) who can help advocate with you for services.Be
careful about the testing they recommend. Ask what good it will do? We were
offered an MRI and brain scan. What for? They couldn’t do anything except
file the information and Erin would have had to be drugged, etc. We chose not
to.

Good books: Woodbine Press: How to negotiate the Special Ed Maze
Woodbine also has an intro book to Autism which is good.
Lovaas “the ME book”, though, modify the exercises a bit. Some incorporate
aversives
Get behavior modification training right away! Usually the local Regional
Center will help get you a behaviorist to work with your family.

Videos: All the DISNEY sing-alongs

Erin started enjoying ‘real life’ videos involving sea creatures, wild animals
when she was 5. Before then, only animated videos would hold her interest.
Tweety Bird, Donald Duck. At 5 she also began to enjoy Sesame Street, though
many kids on this list were ready for SS earlier.

Get into a support group – though this list is great.

Good luck; if you need elaboration on anything I mentioned or need any
more comments, either E-mail me directly or do another posting.

Suzanne
RSCSWS@NCAL.KAIPERM.ORG

——————————————————————————–
Date: Wed, 8 Feb 1995 09:56:00 -0500
From: anne.maclellan@canrem.com (Anne MacLellan)
Message-Id: <60.42519.104.0C1CEB57@canrem.com>
Subject: I just discovered my son

Hi John,

Can you please send me an updated FAQ to me at:
anne.maclellan@canrem.com

Au> I posed that question to represent the occasional similar queries that
Au> I see on this list. I’d like to devote a section of the “Frequently
Au> Asked Questions” memo to such questions and I’m soliciting input.
Au> Right now the memo more or less catalogs things (books, treatments,
Au> symptoms) and in particular offers so many books as to be less than
Au> useful to someone who just found out they need to deal with this. I
Au> might suggest:

Au> -Do you know an excellent “first book” for someone to read who
Au> has just discovered that they will have some responsibility
Au> for someone with autism?

I’d recommend either Charles Hart’s _A Parent’s Guide to Autism_ or
Michael Power’s _Children with Autism: A Parent’s Guide_. Both are
current and written as a good introduction to the subject written for
the parent of the recently diagnosed child. Charles Hart’s book is newer
and contains suggested readings although he expresses certain opinions
(ie. the value of Lovaas that some list members do not agree with.) They
are both nontechnical and good books to share with extended family
members as well.

Au> -Who would you take your autistic son or daughter to see first?
Au> To get things started?

It depends on the resources in your area. I think the most helpful thing
for a parent of a recently diagnosed child is to contact their national
autism society and ask to be put in touch with local parents of older
children. Often these parents will know of many of the available
services in your area and have had experiences navigating the system.
Doctors unfortunately are not usually interested in the provision of
services and some do not see their job extending beyond diagnosis.

Au> -What to watch out for?

People or groups who claim “cures” for all autistic children and offer
costly treatments (especially if they say it works for all autistic
children as most people in the field know, autistic children vary
greatly). Although some parents feel that their children have benefited
from these various therapies, be careful until you’ve investigated them
(how long has the treatment been around, what studies have been done
etc.) and talked to many other families. Some parents will take a ‘leap
of faith’ in a new therapy and find it helps their child but it helps if
you consider your own child as an individual, the cost of therapy, what
support is available, and what effects it will have on your family.
Parents of recently diagnosed children are emotionally vulnerable and
should be cautious before investing large amounts of money in treatment.

Watch out for anyone who claims that it is your fault that your child
has autism or it is an emotional disturbance. Although the parent caused
theories of autism are mostly extinct (in North America), there are
occasional people who will claim to treat autism on this basis.

Anne MacLellan

—
* Blue Wave/QWK v2.12 *

——————————————————————————–
Date: 08 Feb 95 10:56:42 EST
From: Mark Pilcher <75032.2723@compuserve.com>
Message-ID: <950208155642_75032.2723_GHJ75-1@CompuServe.COM>
Subject: I just discovered……

I’m a parent of a 5 year old diagnosed 1-1/2 years ago. Fortunately, I
got through the grieving stage and am in a very proactive state of mind
now.

The excellent first books. I know you’ll get a lot of good
suggestions. People need to read a lot of books. These are the two
that made a difference for me.

Autism Treatment Guide by Elizabeth K. Gerlach (Four Leaf Press, 1993).
She gives 2-3 pages explaining each treatment known to be used for autism.

Let Me Hear Your Voice by Catherine Maurice. You can do something
about this condition. And there’s hope.

Who would you take your autistic child to first?

Unfortunately the pediatrician is always the first and the worst,
unless he is very well informed. Mine wasn’t, but he didn’t let on
until much later in the game. I have made it my mission to help him
learn and have given him every paper written on the subject. He is a
great pediatrician in all other aspects and fortunately, he has been
very appreciative to receive what I’ve given him.

The developmental pediatrician and the neurologist weren’t much
better. Ditto for the first psychologist that we saw. While they
diagnosed it ok, they gave a hopeless prognosis. I would advise
joining a local support group of other parents and asking them for
advice on who to see. There are actually doctors in our area who have
PDD or autistic children themselves and they are very in tune.

What to watch out for?

Miracle cures or interventions that don’t have a lot of hours,
one-on-one, and require a lot of work. We are doing a Lovaas program
and it is a lot of work but we are seeing incredible results.
Especially watch out for interventions that use any kind of aversive.
You don’t need them, they don’t work. Watch out for super-negative
opinions by people who have never tried or know little of the specifics
about a certain treatment option.

Organizations to join?

The ASA and Rimland’s ARRI. The Internet Autism list has been great.

General.

Talk to everyone you can, but form your own opinions and listen to your
gut feelings. I had a feeling Lovaas would be effective with Brandon
and despite all the negativeness out there, we tried it and it has
worked.

A library of parent testimonials on Internet would be nice. How they
found out, what their child’s particular symptoms are, what grieving
they went through, what they tried, how it worked, what they learned,
working with their educational system, etc. etc.

Thanks for compiling this info. It will be very helpful.

Leslie Pilcher

——————————————————————————–
Date: Wed, 8 Feb 1995 11:16:16 CST-6CDT
From: “Peggy Heinkel-Wolfe”
Message-Id: <178765C7618@abn.unt.edu>
Subject: Your what-do-I-do project

John —

I’m so glad that you are doing this and I want to help!

I just saw a new book out on Parenting Your Child with Autism and I
think it might be a real gem. I’ll get it, read it, and if it passes
the muster, get you a citation. Michael Powers book, A Parent’s
Guide, would also be a good first read.

I’d also love to help you flesh out other stuff that comes along and
dig up gems from the archives, if you want. I did a post once a
while back on getting a diagnosis from a developmental pediatrician
that seemed to have a positive impact on those who were reading at
the time. Lynda Huggins had a great one on sensory integration a
while back, too.

Just let me know how I can help, meanwhile, I’ll get after that new
book for you.

Peggy Heinkel-Wolfe
Research Development Specialist
University of North Texas

——————————————————————————–
Date: Wed, 8 Feb 1995 22:53:55 EST
From: Joel Hornstein
Subject: I just discovered . . .

John,

I think 2 books that should be mentioned as first sources of information
are:

Autism Treatment Guide, by Elizabeth K. Gerlach
Children with Autism: A Parent’s Guide, ed. by Michael Powers

Joel Hornstein
—
Joel Hornstein
Internet: joelh@rdz.stjohns.edu

——————————————————————————–
Date: Thu, 9 Feb 1995 02:33:50 -0500
From: Wendy Murphy
Subject: Re: I just discovered my son is autistic. What should I do?

#1 Take a deep breath. A big part of the early experience of having an
autistic child is what you believe it means. Are you stressed out?
Hyperventilating? Mourning the child that was going to be the first
supreme court justice still playing football in the major league? Your
child is the same beautiful individual he was yesterday, before you
heard the word ‘autism’. Few people agree on exactly what that means.
Like “hurt” or “pretty” or “different” or “expensive”; you want to ask
“where? in what ways? how much? what else?” You need to know that
autism is not a fatal disease and that it does not have to involve
physical suffering; if your child is in physical pain, this is
something else and not something that you and he need to accept because
“he’s autistic.” Jerry Newport (who is autistic) said it best when he
said, “Never lower your expectations just because of a diagnosis.”
You are in no shape to be your child’s best advocate unless you
take care of you. Talk to your best friend. Take a bubble bath. Do
whatever you need to do to get some perspective and feel ready to go
on.
These first few weeks are the most dangerous because of the
temptation to play “the blame game.” If you knew what caused this, you
could do something about it, right? So it’s your husband’s fault
because you told him not to tickle the baby so much, or because
everybody on _his_ side is a little weird, or it’s your fault because
you had that glass of wine with dinner in the second trimester, or you
kept working so late into your pregnancy, or you weren’t overjoyed when
you found out you were pregnant or… If you have to do that, do it
with a friend and not with your spouse. Hurt and blame can cause
damage that is hard to repair, and you need each other’s support now.
The fact is, nobody knows what causes autism; is it genetic, is it
related to a virus, is at a metabolic deficiency? Is it related to
physical or emotional trauma before or after birth? Maybe in some
cases it’s one, in other cases another, and in others a combination.
Bottom line: if someone wanted to make a child autistic, nobody could
tell them how. There is no set of chemical or environmental conditions
known that creates an autistic child. As you begin to accept your son
as a pretty neat little guy whose differences have a name, you will
lose the need find blame.
I’ll tell you a secret that parents “lucky” enough to never have a
child with “special needs” don’t know: there are rewards that go with
the struggle. There’s knowing how strong you can be, and how much you
can love. There’s the discovery that each of us is loved best not for
what we give to or do for others, but just because. And that applies
to all of us. There’s a joy in hearing a six year old say, “Mama” for
the first time that can’t be matched by the every day miracles in the
easy development of a “normal” child. And you may find yourself
appreciating your “normal” children’s miracles with a perspective you
never would have had. Many more gifts await you on your journey.
Some of those gifts you may have been happy to do without,
considering the cost. No, you didn’t ask for it. And you may never be
glad you have an autistic child. And it’s not all good. Neither is
having a “normal” child, is it? Just like with a normal child, the
days may be tough and the nights may be worse, but the _moments_ can
fill you with such inexpressible joy that you know why you went in for
this parent thing in the first place.

#2 BOOKS: “Help for the Hyperactive Child” by William G. Crook is an
excellent beginner book on behavior problems and the various approaches
to them, including diet and environmental modification. You will
almost certainly be able to read the whole thing in one sitting. It
has an excellent bibliography and will prepare you to talk to your
child’s doctor about how to help him.
For a view of autism from the inside, “There’s a Boy in Here” by
Judy and Sean Barron is a good start. Judy writes about Sean’s
autistic behavior and then her son Sean, who now functions fairly
normally, recounts what he was thinking at the time. “Emergence:
Labeled Autistic” is Temple Grandin’s autobiography. And Donna
Williams’ two autobiographies, “Nobody, Nowhere” and the sequel
“Somebody,Somewhere” give insight into the uneveness of autistic
perception, as well as some fascinating accounts of her work teaching
autistic children.
“Let Me Hear Your Voice” by Catherine Maurice and “Sonrise: the
Miracle Continues” by Barry Neil Kaufman are books by parents who
successfully treated their autistic children to full recovery. Both
describe other treatments they encountered on their quest (including
the one chosen in the other book). The treatments they chose are
different from one another. They are also the same in some ways. Both
treatments are still available, and the books direct you to sources for
more information.
That covers the doctor, the autistic person, and the parent.
“Achieving the Complete School” by Dr. Douglas Biklen will be a help
when you are ready to deal with schools, but if you just got a
diagnosis, that can probably wait.

#3 ORGANIZATIONS: The first organization you need is the nearest
chapter of the Autism Society of America. Actually, there are several
groups of parents, professionals, and people with autism, but the ASA
is the most visible and largest. You will be served better by a branch
located near you, but even if you are “out in the boonies,” the nearest
chapter should be able to refer you to professionals, resources, and
other parents near you. Being a member will get you the national
newsletter and the local newsletter, if there is one. There may also
be a lending library, parent support group, child care cooperative and
other services available.
If you live in a metropolitan area, you could invest your whole
life attending board meetings, parent meetings and informational
meetings, for autism, developmental disabilities, therapies, advocacy
groups and various treatments. Know how much time and energy you want
to spend on those things and be selective or you put yourself at risk
for early burn-out. Keep time for the other concerns in your life.
The other “must” is the Autism Research Institute. Bernard
Rimland, M.D., has a son with autism, and has shared his research by
compiling literature – from single pages to books – on autism related
topics, and by publishing a quarterly review of autism related articles
from dozens of periodicals. Dr. Rimland is one man with his own
opinions and ideas, and there are plenty of people who disagree with
much that he has to say. He admits that his intention is to review the
recent publications and not to present a balanced, exhaustive account
on each subject. But he has been a constant presence in the changing
landscape of the autism community, and will most likely have
information on the latest topics whether you get this introductory FAQ
in its rough-draft stage, or years after its last revision. Also,
because Dr. Rimland is a known and respected name, your doctor and/or
school staff are likely to give his articles and recommendations
credence. #4 Take another deep breath. It’s a whirlwind. A lot of
your time has been appropriated by this new world, and assumptions you
had about the shape of the rest of your life are being challenged. You
are using acronyms and discussing topics that would have sounded like
Martian just a few short weeks ago. Check in with your spouse, best
friend, kids. Do something normal. Play a game. Take a nap.

——————————————————————————–
Date: Thu, 9 Feb 1995 06:34:53 -0500
From: KIRKBOUD@aol.com
Message-Id: <950209063451_16870854@aol.com>
Subject: Re: What should I do?

The first book I recommend is “Autism Treatment Guide” by Elizabeth K.
Gerlach from the Four Leaf Press, 2020 Garfield Street, Eugene, OR
97405.

After reading chapter on tests–then find a medical of your choice to
get testing (if the route of ruling things out is on objective of the
parents).

Find parents of children with autism in your area.

Don’t be afraid to question “professionals”.

The following ideas depend on the age of the child:

Try other treatments (i.e. DMG, B6 + Magnesium) before going to drugs.

Early intervention.

Association with non-exceptional peers.

Private speech therapy.

Join a support group.

Find someone that can care for the child while parents can have some
time to themselves.

Kirk Boudreaux

——————————————————————————–
Date: Sun, 26 Feb 1995 20:22:42 -0500
From: Robin124@aol.com
Message-Id: <950226202241_33170444@aol.com>
Subject: Re: I just discovered my son …

Hi John, I think this is a really good idea.

Suggestions:

How about I just discovered my child is… instead of son. Many
children are mis-diagnosed initially, autism is not thought of quite so
quickly for females and I believe that that stereotype needs broken.

Secondly, they should contact their local ASA chapter or state
chapter. I’m on the state board of directors for the Autism Society of
Indiana and we accept and re-route phone calls from new parents to try
to get them help. We are also developing our own local resource
booklet for parents. Regardless of anyone’s belief about the ASA,
we’re not a political group, we’re here locally, to help.

They can also contact the Indiana Resource Center for Autism at:

Indiana Resource Center for Autism
Institute for the Study of Developmental Disabilities
812-855-6508

Robin Herman
(Robin124@aol.com)

——————————————————————————–
Date: Thu, 09 Feb 1995 09:22:00 -0820
From: karen.reznek@idealink.washington.dc.us (Karen Reznek)
Message-Id: <6a.16044.100@idealink.washington.dc.us>
Subject: I just discovered my son is autistic. What should I do?

>-Do you know an excellent “first book” for someone to read who
> has just discovered that they will have some responsibility
> for someone with autism?

I vote for “Children With Autism — a Parent’s Guide” by Michael Powers.
Woodbine Press also publishes a number of other excellent books on
autism.

>-Who would you take your autistic son or daughter to see first?
> To get things started?

Someone who specializes in educating children with autism, but is not
“married” to a particular educational strategy. Someone who is familiar
with different methods and is willing to pick out the bits and pieces
that will do your child the best. Someone who is willing to write out a
detailed report of what your child needs, that you can take to the
school system to get an appropriate program.

>-What to watch out for?

Anyone who tells you that their way is your child’s only hope. I would
add, but you probably would not want to put it in your memo: Anyone
whose criteria of success is that your child is indistinguishable from
his peers.

Karen Reznek
karen.reznek@idealink.washington.dc.us
—
þ OLX 1.53 þ Soon To Be A Major Motion Picture.

——————————————————————————–
Date: Fri, 16 Jun 1995 09:51:10 -0400
From: Michelle McCormick
Message-ID:
Subject: advice for parents of the newly diagnosed

Dear Mr. Wobus,

I am new to the modemmed world; forgive me if I mess this up. While I
am delighted to find this information on the web, and have some unique
advice, I would like to see more effort on the part of professionals to
educate themselves about resources and realities concerning autism.

I took my son to six different specialists. I knew there was something
wrong. Six different times I was told, in varying degrees of hostility,
that I was imagining things, inventing scenarios, even accused of
Munchhausen by proxy (a charming thing to hear at 8AM). On finding the
seventh expert, who observed my child for exactly five minutes, I
finally got what I had fought so long to hear: a diagnosis. “Your son
is classically autistic. There is nothing I can do. I suggest YOU find
the name of a reputable institution and surrender him to the state
before he destroys your life.” That was the sum total of the session.
The neurologist who said this to me was not a crusty codger of the old
school, either, but a woman my own age, represented as a progressive
thinker in pediatric neurology.

My best advice to parents of the newly diagnosed is: Just because
they’re experts, doesn’t mean they AREN’T bucketheads. Please don’t
lose confidence in what you observe in your own child. You are the
hands on expert, having logged in countless hours of trial and error
intervention and observation on this particular child. Impress that
fact on the experts. Don’t be intimidated by jargonese. If they are
using expressions unfamiliar to you, make them explain. If you don’t
get it, make them explain again. Don’t be afraid of being annoying.
(This is different from being hostile.) You are advocate #1 for your
child, and if you are perceived as willing to back down, what message
will that send to the professionals?

None of the above means ‘don’t listen,’ however. There is a fine line
between aggressive advocacy and belligerence, and where that line is,
is a learned experience. So don’t be afraid to admit when you have made
a mistake.

All of this may sound confrontational and aggressive. Sometimes it is.
But what you are trying to do is build a parent/professional working
team; a team of equals. You would (hopefully) run screaming from a
professional who said, “whatever you say;” “I guess you know what’s
best;” “oh gee, I’m just a poor physician, what would I know?” At least
I hope you would. You must learn how to become a positive and equal
advocate for your child, so that everyone can work together towards his
or her best possible life. It’s not easy, and there are no handbooks
for acquiring these skills. It doesn’t happen overnight. I’ve been at
this business for nine years now. I still don’t always get it right.
——————————————————————————–
Date: Mon, 12 Feb 1996 19:32:16 -0500
From: mmclib@usit.net (Warden Memorial Library)
Message-Id: <199602130032.TAA19554@use.usit.net>
Subject: autism question response

John,

Glad to see there is so much info on autism on the Internet. My autistic
son David is 20 years old and he has been in special placement for 10 years.
In 1982 I was divorced (David was 7 years old). Single parenthood is very
difficult when there is an autistic child.

You posed a question on the net about recommendations to people who discover
that they have an autistic child. All the answers were good (there are no
bad answers!). I read the Noah book, Sonshine, and the book put out by the
Institute for Human Potential (I think) in Philadelphia (I think). I read
everything I could get my hands on and became a walking encyclopedia on
autism. Knowledge is power and that is important.

My best suggestion is that couples who have an autistic child have counseling
sessions right at the beginning in addition to the periods of extra stress.
According to some stats that I saw several years ago, 95 % of all couples
with an autistic child divorce, and the majority of those who divorce have
an autistic son.

Donna Reagan
——————————————————————————–
Date: Fri, 06 Jun 97 09:43:00 EDT
From: “Green, Laura”
Message-ID: <33981494@mail-pc.fuller.durham.k12.nc.us>
Subject: The first thing a parent should do

I saw your website. Glad to see so much info on autism. I am a parent
of a 6 year old girl diagnosed with autism. The books “Let me hear
your voice”, the “Me Book” and “The Ultimate Stranger” are my top three
favorites.

First thing I believe a parent should do is get a complete neurological
exam. (a good one). My daughter presented with seizures which
progressively got worse and contributed greatly if not caused her
autistic state. I have spoken to various parents with children with
similar circumstances. In our case Ashley had intractible seizures,
mental retardation and autism. She had MST surgery last June although
she was not diagnosed with Landau Kleffner which MST is usually used
for. She also had 16 small focal areas removed and she has done
remarkably well! No more focal (staring) seizures which often lasted
in 20 minute stints. She is here instead of “out there”. No more eye
blinks. She learns now and doesn’t “forget” what she has learned. She
has progressed at age 5 1/2 at a mental age of 10-12 mos. to between 18
– 24 mos. in one year. She has gone from 5 to 10 occasional words to
100 – 150 spontaneous meaningful words. I cannot say what this has
done for her life. Yes, she is still seriously delayed and still
diagnosed as autistic, but she is gaining in leaps and bounds and we
are no longer looking at a child who had to wear a helmet on a daily
basis with severe and profound diagnosis and without hope. It is
impossible to tell how well she will do, but I will be pleased with a
moderate outcome and can only pray for more.

Lovaas–is the best teaching method for these kids. No doubt. Early
intervention is so important. But even with Lovaas, my daughter gained
minimally because her subclinical seizures were constant, every minute
of every day. Thank God for Drs. Patil and Andrews in Omaha Nebraska
for performing this surgery and for helping to give my daughter a new
life.
——————————————————————————–
Date: Sun, 06 Jul 1997 02:41:15 GMT
From: Heidi Roger
Message-ID:
Subject: Your child

I have not been in this boat all that much longer than you but I would
like to offer a few suggestions.
1. Take a deep breath
2. Read the book “Let me hear your voice” by Catherine Maurice. It
gives you the opportunity for some really good stress reducing cries
and gives you a lot of other information. It also gives you some hope.
Even if you decide not to utilize Applied Behavior Analysis at least
you will have a success story to remember and hang on to in the
months/years to come.
3. Don’t let the label given to your son overwhelm you as long as it
makes him eligible for whatever assistance you can get from the
state/school district/whatever-concentrate on identifying his areas of
delay and research appropriate therapies to improve these areas.
4. Get the DAN manual from the Autism Research Institute. It is a
reference of the majority of medical tests given to detect the possible
causes of Autistic disorders that have already been established.
5. You are already ahead of many of us if your son is verbal. (my son
has no words, just noises). He sounds like he has cognitive skills and
can probably learn a lot.
6. Find a doctor or speech therapist that has worked with kids like
yours and, if you trust them, use them to help you sort your way thru
this maze. Talk with other mothers and, if they seem credible, use them
to help you. Use this list, ask a zillion questions. Just search the
word autism on the internet and you’ll be sitting in front of the
computer for weeks. You’ll find plenty of info on dietary and drug (be
careful) interventions.

Hang in there,
Heidi
——————————————————————————–

This page can be found at www.autism-resources.com.