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

My question:
Date: Tue, 07 Feb 1995 12:50:23 -0500
From: "John M. Wobus" <...>
Message-Id: <>
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

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: (Casey van der Grient)
Message-Id: <>
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.



Real Life: Casey van der Grient        SHL Geographic Information Systems
Internet:   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: 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) Message-Id: <> Subject: I just discovered my son Hi John, Can you please send me an updated FAQ to me at: 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 <> 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: <> 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:
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: Message-Id: <> 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: Message-Id: <> 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 (
Date: Thu, 09 Feb 1995 09:22:00 -0820 From: (Karen Reznek) Message-Id: <> 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 --- OLX 1.53 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: (Warden Memorial Library) Message-Id: <> 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: <> 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

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