Girls, Boys, and Autism

Newsweek ^ | 8 September 2003 | Geoffrey Cowley

[Lorianne]

Girls, Boys and Autism By Geoffrey Cowley, Newsweek

Andrew Bacalao has a good, sharp mind. At 13, he's a decent pianist, a devotee of Frank Lloyd Wright, a master at videogames and jigsaw puzzles. He remembers phone numbers like a Pocket PC, and he can dismantle a radio or a flashlight in the time it takes some people to find the power switch.

[truthkeeper]

Mine already had most of his vaccinations by the time he was diagnosed. After consulting with his doctor, the only one I put the skids on totally was the second MMR. She agreed, why take the chance, especially since he'd already had the one? She did convince me to do the chicken pox shot, which I was a little worried about. (Chicken pox at a later age can be devastating, according to her, so I didn't fight that.)

[RepubMommy]

Mine already had most of his vaccinations by the time he was diagnosed. After consulting with his doctor, the only one I put the skids on totally was the second MMR. She agreed, why take the chance, especially since he'd already had the one? She did convince me to do the chicken pox shot, which I was a little worried about. (Chicken pox at a later age can be devastating, according to her, so I didn't fight that.)

Caitlin, my girl, did not have any MMR. I do fully plan on vaccinating her, just not at this time, probably after aged 3.

I'm finding this thread very informative. I like the mainstreaming comments, as I have already pursued several private schools in NJ (we have some good one here and she is on the list for Alpine Learning Group which is mentioned in Catherine Maurice's Let Me Hear Your Voice) but I am thinking my school district is going to take one look at my daughter and pass on giving me the funds as they will probably cite her "too high functioning". What a double edged sword. Anyway, I have a little over a year to figure this out, I am all for mainstreaming if she could handle it.

[ChemistCat]

Dianna, that the second novocaine shot bothered him so much makes me think that he had a reaction to it. I had a dentist inadvertantly inject some into my circulatory system. Boom--that stuff hits the heart and it starts racing, you get lightheaded and dizzy and sick to your stomach. That would definitely cause the fear that you're seeing. I know it made ME reluctant to have dental work for quite some time after it happened.

[ChemistCat]

Even if the link between vaccines and autism could be proven, which it hasn't been, yet--we have to keep in mind that polio, mumps, whooping cough, typhus, measles, etc., used to be far, far more devastating to a broader swath of children. When we had our children vaccinated we had to sign a form that stated that we understood that DEATH was a rare complication that DOES occur...and we still let them do it. We forget what it was like when half of all children died before age 5. A little time in an old cemetery makes you realize how blessed we are now. And how many of those little markers are gone, and how many little graves never had a marker at all? How many people lived their lives crippled or blind because they couldn't be vaccinated?

I personally think that the SCHEDULE of vaccines is a problem that ought to be addressed, and is likely to turn out to create or exacerbate, or just trigger, many immune system disorders. The immune system wasn't built to deal with so many insults in such a short period of time. We expose our children's immune systems to so many viral entities in a short time, while they are still so young that they shouldn't be exposed to nearly so many by natural transmission--that it wouldn't surprise me at all if the immune system didn't get "confused" and turn on its own body's tissues. I am convinced that we will see research linking vaccine schedules to diabetes, lupus, chronic fatigue syndrome, you name it--maybe even autism and other developmental disorders. ADHD? Maybe. Liberalism? Who knows!

[ChemistCat]

In my son's first grade year he was completely mainstreamed with an aide. The class size was huge, so we moved him for second grade to a program where he was partially mainstreamed and partially in the Special Ed room in a program for autistic kids. Well, that was a mess but only because Oklahoma City Public Schools was running it. Partial mainstreaming could have worked very well. The idea was that he was supposed to do most of his work with his regular class, but have the special ed room to retreat to when he was overstimulated. What actually happened was that the special ed room was there when the TEACHER got overstimulated. And the special ed teacher had only one aide of the four she was supposed to have, and some of those kids were BIG and not potty trained. Many of them nonverbal, most lowfunctioning--and my son was sent there to be babysat way too much. But if he hadn't taken such a spurt in developmental ability about then, we would still probably be dependant on OKC for his education. As it is, we pay $575/month tuition for three kids, grades 6, 3, and 1, and count it a REAL bargain.

You can have an IEP written to serve your son's needs. Funding isn't something they can cite as a reason not to give him what he needs. They are required to give him a free, appropriate public education, including summer programs if that's what he needs. If you don't like what's in the IEP you don't have to sign it, and you can demand that they change it--if they won't, demand a due process hearing, and you can bring a lawyer or anyone you want to any of these meetings, including doctors etc who can support your statements about what he needs. They are not allowed to reject a kid unless they can prove he does not fit one of the diagnostic criterias. If he's autistic, he fits, if he's visually or hearing impaired he fits, etc.

If you're not satisfied with your son's current IEP you can request another meeting and they have to do it. They can keep writing IEPs till they get something that will do what your son needs.

There is probably a local organization that can recommend help with forming the IEP goals and resources your son needs. If you're trying to get them to pay private tuition for him, you will run into many, many stone walls. We didn't even try that. We're paying it ourselves for many reasons.

Hope this helps. You have to be a panther-parent, which is hard for some of us who have more reserved natures. Sometimes they want meek little parents who will rubberstamp their programs, and sit back and tolerate the programs not even being implemented right.

[truthkeeper]

but I am thinking my school district is going to take one look at my daughter and pass on giving me the funds as they will probably cite her "too high functioning".

I'll bet they will too. It may turn out to be the best thing for her. A year ago I wouldn't have believed my grandson could have handled the stress from the socialization, but now I have a gut feeling he will thrive. He really responds now to the challenges of dealing with other kids.

They grow and change so much, and so quickly.

[ChemistCat]

sorry, DAUGHTER! SHE. I am sorry I made that mistake in my prior post. Please don't tell her I mistook her for a boy!

[truthkeeper]

Very interesting points. Someone just put up a thread titled, "Study Casts Doubt on Theory of Vaccines' Link to Autism."

Y'all may want to go take a look at that one. A good read, and informative.

[truthkeeper]

Sometimes they want meek little parents who will rubberstamp their programs, and sit back and tolerate the programs not even being implemented right

"Sometimes?" My experience has been "ALL the time."
Sad, but true.

[Dianna]

That would definitely cause the fear that you're seeing. I know it made ME reluctant to have dental work for quite some time after it happened.

I had no idea that that could happen! So is it only if the novacaine isn't injected properly, or does it just happen sometimes? I'd much rather hope it was a reaction than a regression of some sort. Thanks!

[Mfkmmof4]

Do any of your children hate scissors. It took a smart teacher to realize Daniel was terrified of scissors. Until that was determined taking him to the barber was agonizing.

Now when he goes he will walk in and say "no scissors". In the past he made such a spectacle of himself that he is well known. :)

[Dianna]

Do any of your children hate scissors.

No scissors aren't a problem, thank goodness. But we do deal with fears of thunderstorms, lightening, heights (no escalators or stairs...thank the Lord for handicapped access), running out of gas, getting lost, being late, dying. He won't go near frogs or most bugs although he is fascinated by snakes. I'm not sure he'd actually touch one though.

Going almost anywhere fun is a challenge. You wouldn't think heights could be such a problem, but going to any kind of play or show at a real theater, the circus, an Omnimax theater, sporting event, water park, amusement park, museums and for a time even upstairs in the mall was a big challenge for him.

He does do elevators but if the space is "open" and you can see upper or lower floors (unlike a regular office type building) forget it!

[Mfkmmof4]

The definition got to me because at 8 months my son could repeat his name and then at about 2 I have a video of him saying while on vacation I want to go home....clear as a bell.

Finally, at the age of 3 1/2 my husband took him to a new pediatrician because I was not sure if I was a lousy parent or if Daniel was nuts (lol). Once I learned from a shrink that it was him and not my parenting I was relieved but then came a whole new set of issues.

By this time his language was limited and I could not get him toliet train and as things turned out he was not completely trained until about 6 :(. At one point I had 3 in diapers at different ages.

[RepubMommy]

Amen! Those early diagnoses are especially critical. Unfortunately, many people know or suspect there is a problem but go into denial because they can't bear dealing with it. (As if ignoring it will make it go away.) Education is always the key. Knowledge is power!

Agreed. I have to say I did not go into that denial phase, and we got the diagnosis at 16 months. I had the ball rolling almost immediately and she has been receiving intervention for almost 4 months now (she is 22 months). I have a good friend however, who is the mom of a 3 y/o autistic boy, and she continues to deny this term. She will accept PDD as his diagnosis, but not autism and insists that the two "are entirely different". She even gets annoyed with me when I refer to my daughter as autistic because my child is functioning at a higher level then hers. You really can't get caught up in worrying what label the doctors apply to the child, kwim? Just get the kid the help he needs.

[truthkeeper]

I agree with every single word you wrote. Good for you for being so proactive and getting your daughter the help she needs. Hopefully your friend will snap out of it soon and get moving. She has so much to do.

[truthkeeper]

She will accept PDD as his diagnosis

Isn't PDD just the dumbest diagnosis? (Pervasive Developmental Disorder.) Essentially, it says "We know there is a problem but we don't know what it is."
Useless, IMHO.

[RepubMommy]

You can have an IEP written to serve your son's needs. Funding isn't something they can cite as a reason not to give him what he needs. They are required to give him a free, appropriate public education, including summer programs if that's what he needs. If you don't like what's in the IEP you don't have to sign it, and you can demand that they change it--if they won't, demand a due process hearing, and you can bring a lawyer or anyone you want to any of these meetings, including doctors etc who can support your statements about what he needs. They are not allowed to reject a kid unless they can prove he does not fit one of the diagnostic criterias. If he's autistic, he fits, if he's visually or hearing impaired he fits, etc. If you're not satisfied with your son's current IEP you can request another meeting and they have to do it. They can keep writing IEPs till they get something that will do what your son needs. There is probably a local organization that can recommend help with forming the IEP goals and resources your son needs. If you're trying to get them to pay private tuition for him, you will run into many, many stone walls. We didn't even try that. We're paying it ourselves for many reasons.

Firstly, thanks for the correction on the gender for my daughter:) Secondly, we've already had to call an emergency meeting to fix the problems in my first IFSP (it's called IFSP not IEP for children under the aged 3, I'm sure you know this, just clarifying for anyone else to avoid any confusion), I had a pitbull of a parent advocate sit in via phone conference for the meeting which lasted 3 hours. Noone initially told me I was entitled to more then the measly 2 hours they offered in the beginning, which comes as no suprise. Now we are in the midst of starting an ABA in home program in my home through EI with me funding a small portion of it (NJ apparently has a different definition in mind of "free and appropriate and I have to pay 10% of what I am over the poverty level in order to recieve more then 2 hours of services, YES this is an absolutely legit law). Anyway, my point is, I am fully aware of how the state works on these issues and thankfully have a good parent advocate to help guide me. It's unfortunate that this is a "learn as you go" journey, as I would have never signed the first IFSP if I knew then what I know now.

[truthkeeper]

Do any of your children hate scissors. It took a smart teacher to realize Daniel was terrified of scissors. Until that was determined taking him to the barber was agonizing.

Scissors and haircutting freaked mine out too. Then he's start sobbing and all the hair bits would stick to his wet face, eyes, and tongue, which would put him over the moon. Thank God he finally grew out of that one. He now sits in the barber's chair as quiet as a mouse and as good as gold. You'd never know he had a problem.

[RepubMommy]

Isn't PDD just the dumbest diagnosis? (Pervasive Developmental Disorder.) Essentially, it says "We know there is a problem but we don't know what it is." Useless, IMHO.

Yes, IMO it's too broad. It's like saying, "you have cancer" but not being able to tell where it is. I think some of the more denying parents (like my friend) may utilize it as comparison to PDD-NOS, but IMO the two are different. Well, I gotta split. Caitlin has speech in a bit:)

[truthkeeper]

My grandson has a lot of the same issues as yours but elevators were the absolute worse. Those caused hysterical shrieking fits from the time he was in a stroller. Now that he's almost 6, he will reluctantly go into the elevator, but he insists on standing on the tops of my feet and grabbing my legs.

I hope he grows out of this soon. He's getting heavy!