Re: Just below ASD

September 27, 2006

Sorry, this is a little long winded... about labeling

I've been through the same problem with my son. He has been finally

diagnosed (at 4 years) as having sensory processing disorder with

oral and verbal apraxia. When we saw a neurologist at 2.5 years he

said " PDDNOS " . But he also suggested something to my husband and I

that ended up working out great for my son. He suggested that we

allow him to put a diagnosis of " autism " . He said that he believed

that he was on the spectrum and that the only way to guarantee that

we got all of the services through the school district that he

needed was to go this way. We didn't really care what he

called " it " , we just wanted Bobby to get everything that was needed,

so we said sure.

He went to the township preschool disabled program when he turned 3

and didn't make that much progress. I wanted to see how or if he

would progress, so I didn't push the " autism " diagnosis although I

had informed them verbally of it. After a year in the program, his

teacher told me that she could not give him what he needed, that he

needed special attention (basically, all of the techniques used to

teach kids diagnosed with autism). I then wrote a letter to the

school district and informed them that my child needed to be in a

full day program for autism and occupational therapy to address

sensory issues. I also forwarded a copy of the report from the

neurologist.

He started the program in the summer and what an incredible

difference! He started speaking (words) within a week and is now

saying phrases. Some speech is still not very clear, but he's

improving on a daily basis. He is finally in the learning

environment where he needs to be. His confidence in social

situations has changed dramatically. He used to isolate himself at

school - now he approaches kids in the playground to play. His

appetite has improved and he seems so much happier (as are his

parents!).

When I took him to the developmental pediatrician in August, she

told me I had done the best thing possible for my son. She said she

gets sooo many parents in her office complaining about a lack of

services for their children but they won't allow their child to

be " labeled " . She made the updated diagnosis of SPD but warned me

NOT to share this diagnosis with the school district because they

could take away those services without that disgnosis. She also

told me NOT to move - that my school district was the place to be

right now for Bobby.

I know when I told others that we had allowed a diagnosis of autism,

some were appalled. They said that it may hurt him in the future

being labeled " autistic " . One woman even said that her son's

college application asked this question and that I was dooming him

in the future. Our thoughts were, he can't even speak - we don't

even know if he'll be able to go to college or ever be independent,

who cares about 14 years from now?

Just my 2 cents...

> > >

> > > I don't understand how they can diagnos a child that young

> unless

> > the symtpms are evident. PDD-NOS means they are unsure....

> > >

> > > Can you please elaborate on globally dev. delay?

> > >

> > > I am getting my endorsement / masters in autism...any info

> would

> > be helpful for me to research.

> > >

> > > Thank you!!!!

> > > Tonya

> > >

> > Hi Tonya....they can and do diagnos kids at around age two. Our

> > first pdd dx came when my son was about 20 months old....he had

> > stopped babbling, became extremely picky with foods, and was

> self-

> > stimming.

> > He also seemed social, lovable and warm. They gave him dx of

> pddnos.

> > (later when he was around 4 he got dx of apraxia.) He is not

> global

> > dev delayed but when he was 2 they thought he may possably

> > be...which some people think is the same as MR.

> >

>

September 27, 2006

This is an interesting story. I've heard so many warnings about not

allowing one's child to be mislabeled just to get services and how

children have languished when placed in programs intended for

autistic children and yet clearly (from your example) it is

beneficial in some cases. It's just so hard to know what the right

thing to do is. I personally wish everyone could just move away

from the labels when children are this young and just address the

weaknesses regardless of what causes them. Every child who needs

treatment deserves it and parents shouldn't have to agree to a

diagnosis that isn't correct just to get it (and certainly shouldn't

have to worry about how it will affect things 14 years down the

road). Congratulations on your son's progress. It sounds like he's

doing great.

> > > >

> > > > I don't understand how they can diagnos a child that young

> > unless

> > > the symtpms are evident. PDD-NOS means they are unsure....

> > > >

> > > > Can you please elaborate on globally dev. delay?

> > > >

> > > > I am getting my endorsement / masters in autism...any info

> > would

> > > be helpful for me to research.

> > > >

> > > > Thank you!!!!

> > > > Tonya

> > > >

> > > Hi Tonya....they can and do diagnos kids at around age two.

Our

> > > first pdd dx came when my son was about 20 months old....he

had

> > > stopped babbling, became extremely picky with foods, and was

> > self-

> > > stimming.

> > > He also seemed social, lovable and warm. They gave him dx of

> > pddnos.

> > > (later when he was around 4 he got dx of apraxia.) He is not

> > global

> > > dev delayed but when he was 2 they thought he may possably

> > > be...which some people think is the same as MR.

> > >

> >

>

September 27, 2006

great point!

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September 27, 2006

Good point. I think the difference is this: If a child IS autistic,

or PDD, or anywhere on the spectrum, a placement that is gearerd

towards ABA is absolutely the right thing, and in many cases if

early intervention is provided a child CAN make significant gains

and sometimes even lose the diagnosis in favor of another one as was

the case for Bobby. Clearly, then, the emphasis should be on getting

an accurate diagnosis as early as possible from a reputable,

informed developmental ped who has lots of experience diagnosing

many different kinds of conditions. In my son's case, the diagnosis

was always dyspraxia, and that was because his deficits were in the

area of oral, verbal, and motor dyspraxia. The dev ped that

diagnosed him at Kaiser was the former head of a regional center and

otherwise well-versed in autism given her ties to the MIND

Institute. Dr. Agin's credentials are even more impressive. My son

did not stand out from his peers other than in the areas of

oral/motor/verbal apraxia. He very much wanted (and still very much

wants) to speak/write/play sports just like everyone else. After the

Kaiser dev ped suggested in a follow-up appt. that 5 hours per week

of handwriting utilizing an ABA approach might be helpful in getting

him to write, his OT said something along the lines of this: " It is

not that he does not want to write, it is that he is neurologically

incapable of performing. " Under the circumstances, what he needed

was sensory integration based OT and not ABA. When I asked Dr. Agin

about the other dev ped's suggestion, she said that it would be fine

to offer up an occasional M & M as a reward if he wrote something

well, but she did not suggest I track down an ABA therapist for 5

hours per week of ABA-based handwriting training - instead, she

endorsed what we were already doing: Handwriting Without Tears.

Again, I think the issue becomes getting an accurate diagnosis

because the therapy that will go along with that diagnosis and the

classroom setting will likely be different based on the dx. It was

good for my son to be in a typical preschool with typical kids

getting lots of therapy on the side, and it is good for him now to

be in a mainstream K with typical kids while continuing to get

therapy on the side. He is performing well: following directions,

getting along with others, singing loudly & confidently, loving

school. I think for most kids who are dyspraxic/apraxic and not

autistic (including PDD) the same kind of exposure to typical kids

in a typical setting would be ideal - but that's just my opinion and

I respect the fact that others may disagree. It wasn't easy on him

or me when he was the only kid still struggling to write his name,

or draw a picture, or put on his jacket. But he has many other

strengths and those strengths blossomed and continue to blossom.

Another thing I've learned from this process is that while it is

incredibly helpful to share stories and gain insight & courage from

one another, it is important to keep in mind that without actually

meeting another parent or another child in person it is very

difficult to accurately compare child 1 and child 2 and condition 1

and condition 2 - hence, again, the need for help and feedback from

a diagnosing professional who is well-respected & well-versed in a

wide variety of neurological conditions.

> > > > >

> > > > > I don't understand how they can diagnos a child that young

> > > unless

> > > > the symtpms are evident. PDD-NOS means they are unsure....

> > > > >

> > > > > Can you please elaborate on globally dev. delay?

> > > > >

> > > > > I am getting my endorsement / masters in autism...any

info

> > > would

> > > > be helpful for me to research.

> > > > >

> > > > > Thank you!!!!

> > > > > Tonya

> > > > >

> > > > Hi Tonya....they can and do diagnos kids at around age two.

> Our

> > > > first pdd dx came when my son was about 20 months old....he

> had

> > > > stopped babbling, became extremely picky with foods, and

was

> > > self-

> > > > stimming.

> > > > He also seemed social, lovable and warm. They gave him dx

of

> > > pddnos.

> > > > (later when he was around 4 he got dx of apraxia.) He is

not

> > > global

> > > > dev delayed but when he was 2 they thought he may possably

> > > > be...which some people think is the same as MR.

> > > >

> > >

> >

>

September 27, 2006

It's important for kids to get the ASD diagnosis as early as possible.

If the dx is delayed, they may get speech and OT therapy, but they

don't get the intensive intervention that may allow them to improve

dramatically (and possibly to the point of losing the diagnosis

eventually). I've seen many sad situations where a child's parents

took a " wait and see " approach on a neurologist's advice, and now have

older children who can't speak at all, aren't potty-trained, etc.

Maybe that would have been the outcome any way, but intensive, early

intervention gives a child with ASD their best chance for improvement.

I also think that the reason my daughter has now recovered from

apraxia and ASD is exactly because her neurologist diagnosed her right

as she turned 2. If he had waited, we might not have started ABA at

such a young age, and I do not think she would have recovered. It

scares me to think how much we owe to her doctor for diagnosing her

early, when many docs in my area are reluctant to diagnose at that age.

Early diagnosis is crucial. I just hope that I have to worry about the

affect of my son's ASD diagnosis on college applications. And I think

he's doing great and he probably will go to college, but I am

confident that he would be doing much better now if he had been

diagnosed at a younger age (he was 4).

> > > > >

> > > > > I don't understand how they can diagnos a child that young

> > > unless

> > > > the symtpms are evident. PDD-NOS means they are unsure....

> > > > >

> > > > > Can you please elaborate on globally dev. delay?

> > > > >

> > > > > I am getting my endorsement / masters in autism...any info

> > > would

> > > > be helpful for me to research.

> > > > >

> > > > > Thank you!!!!

> > > > > Tonya

> > > > >

> > > > Hi Tonya....they can and do diagnos kids at around age two.

> Our

> > > > first pdd dx came when my son was about 20 months old....he

> had

> > > > stopped babbling, became extremely picky with foods, and was

> > > self-

> > > > stimming.

> > > > He also seemed social, lovable and warm. They gave him dx of

> > > pddnos.

> > > > (later when he was around 4 he got dx of apraxia.) He is not

> > > global

> > > > dev delayed but when he was 2 they thought he may possably

> > > > be...which some people think is the same as MR.

> > > >

> > >

> >

>

September 28, 2006