Got a Dx

[AnalogWife]

It's Autism Disorder. I really thought it was going to be PDD-NOS. I expected an ASD diagnosis, but came out of the dx believing this is much deeper than I was thinking.

Such as, since DS is 35 months an still has a profound speech delay, it is unlikely that he will later be dx'd with Aspergers.

She said that his delay is "concerning" as in a nice way of saying "really, froughtfully BAD" and also called attention to his many skills, and that they provided "a great place for therapists to start." As though even his prized skills were lacking.

She said that his play skills were delayed.

And then I went home to read her literature, in it stating that some adults with AD go on to have jobs, but they aren't great jobs, just jobs, and that we should plan for DS's adult care.

I don't think I was looking at this aspect. I think I thought he would have the potential to grow up to be Temple Grandinesque,

...now I'm not so sure. It seems like the tip of the spectrum is now out of our reach, that we're sort of fleshing out at the bottom. I KNOW HE"S ONLY 3, but I can't be the only parent who has wonder what the future has in store. These reports we get are so gloomy. How can we get such gloomy reports on someone who casts so much sunshine on our lives?

What can parents expect from Autistic adult children?

[beachbaby]

I didn't want to read and not post. We've only just begun down the road of evals, so I don't have much helpful information....but wanted to let you know you have support.

[starlein26]

Getting the "official" diagnosis is when the grieving process begins. It's hard, and often dark. You have to mourn a serious loss, although the loss isn't permanent.

Once you have allowed yourself to "go there", I think you'll find yourself able to see your son again...for who he is. And accept this new path in life.

Sorry. We all understand how you feel. And we're all here for you as you need the support.

[AllyRae]

Your doctor is wrong. There are *many* adults with ASDs that go on to have families, good jobs, and are productive members of society.

I'll tell you what my child's therapist said. DS was weeks shy of 3 when he was diagnosed as severely autistic (with social, play, and self help skills below the 3 month old range, he was self-injurious, barely verbal, and had severe behavior issues)... The therapist told me to never believe that he'll be less than a successful productive adult. Don't accept anyone telling me that he'll never graduate high school, go to college, have a family, and hold down a good job. Don't accept anyone putting low expectations on my child. Nobody can tell me what my child will be capable of in 20 years.

At the time, I thought the psychologist was full of it. I looked at my child and I couldn't imagine the child passing kindergarten, much less anything else.

Now, he's 6 1/2 years old. He's been in intensive therapies since his diagnosis. He now attends a mainstream montessori school with no aids. He scored 148 on his IQ test. He's reading and writing. He has friends. He now tests at mild-moderate autism and has had his diagnosis changed to Aspergers. He's fully verbal (and has the typical Asperger's encyclopedia vocabulary. : ). It's been a lot of hard work and struggle to get to this point, but he is thriving. He still has his difficulties of course, but he is also doing extremely well. There is NO reason why he can't do what he wants to in life.

As a parent of a child with autism and as a doctoral student studying autism (and as a former professional in the field), I can tell you that 20-30 years ago, the majority of the individuals diagnosed with autism as children were profoundly autistic. We also didn't have as many treatment options back then. That combination was not positive. Now, many of the children on the spectrum are not as profoundly affected, children are being diagnosed at a younger age, and there are so many treatment options. We do not quite know how our current generation of children with autism will fare as adults, but it looks a lot more promising.

Also keep in mind that while not every child will make as significant progress as others and yes, there are some individuals that will need long term intensive care, with younger diagnosis, there is the potential for the children to progress a lot. So, please don't be scared of your doctor's statistics...those were for a previous generation that had a different diagnostic process and different treatment options. NOBODY can tell you what *your* child is capable of. At three years old, your child's future is not set in stone yet...

Yes, there are children that will grow up and need adult care. Prepare yourself for that possibility, but also don't let your child's possibilities be determined by what other people think he will be capable of. That's been very helpful to me when I advocate for my son for therapies and his IEP--I have to remind them that my son will determine what he is capable of and not them, so they should strive for what *he* is capable of and not what they think he is capable of...because the expectations others have of him with his diagnosis are far below what he is actually capable of.

:

[2boyzmama]

Originally Posted by AnalogWife

It seems like the tip of the spectrum is now out of our reach, that we're sort of fleshing out at the bottom. I KNOW HE"S ONLY 3, but I can't be the only parent who has wonder what the future has in store. These reports we get are so gloomy. How can we get such gloomy reports on someone who casts so much sunshine on our lives?

What can parents expect from Autistic adult children?

We're not dealing with ASD here, so I'm not speaking from personal experience. BUT, I can tell you that NO ONE can say for sure what your son will or won't, can or can't do. Nobody. There are children on this forum who should have died from illness, injury, or birth defect, yet they're alive and thriving today. There are children on here who were suspected to never walk/talk/eat/breathe for whatever reason, and some do.

I don't know what your son will do, the dr doens't know. It is wise to be aware of and start planning for the "worst", but it is also wise to be cautiously optimistic. Assume he CAN and WILL, and never ever give up. On the flip side, it's never smart to bury your head in the sand, and maybe that's what the dr was trying to convey. It's such a careful balance between realism and optimism/hope.

[NightOwlwithowlet]

Lots and lots of hugs to both you and your son. There is no way to predict what will happened with our kids.

Almost four years ago, a developmental pediatrician told us our son would never learn to read, never have friends, never be in a regular class room, and never live independently. He was diagnosed with autism and an IQ of 65.

S. will be 8 next week. Okay, he doesn't live independently, but all over her other predictions are way off. He spent the morning reading a book (at grade level), playing outside with his neighborhood friends, and is over at play date with his best friend from kindergarten.

Because of therapy (play, speech, occupational), bio med, treating his food allergies, and really hard work, he lost his autism diagnosis a couple of years ago. He has ADHD and SPD, but last time we had his IQ tested it was in the 120 range. He's not typical, but I don't fear his future. He had a huge speech delay at three years old, and his receptive language normalized at six. He still has an expressive delay, but it is primarily from his ADHD, he tests normal when on stimulant medications.

You know your child way better than any doctor, you know his strengths and his weaknesses. I remember reading the data and being so scared. I'm still freaked out when I read the possible out comes for my son. But, I also see how many of the successful people with disabilities who fly under the radar, people who weren't diagnosed 20, 30, 40 years ago.

I don't know what the future holds for my son. But, I'm not sure what the future holds for any kids. My son wants to be an engineer or a ninja when he grows up. He wants to marry Tinkerbell or the girl he loved in kindergarten. He's planning his future, not me.

[jnet24]

Just wanted to give you

[karne]

We also are not dealing w/an autism dx., but what I can say is that life is long. Absolutely no one can tell you what the future holds for your child. Yes, there can be informed ideas, but there is simply no way to say what impact services, treatments or therapies we might not yet even know about, etc. will have on our kids. And, never, ever discount the power of having parents who believe in you, and other caregivers, thereapists, teachers, who will not give up! This makes more of a difference than I can say. The script is not written. It is OK to believe that your child will do more than anyone else thinks they can, and be happy as well.

[AnalogWife]

Thank you. :

I'm so glad I posted this. I've been FB'ing an old friend, but he doesn't have kids, let alone a SN/ASD one, he is of course very supportive but doesn't have ther perspective that I've been reading in this thread.

Since Summer 2009 I've been bouncing around my own spectrum of "No Big Deal" and "Holy Crap We're Effed!" and everything in between. It never fails, whenever I get a new report I get thrown out of sorts into the abyss, and this dx is no exception. Thank you for the reminder to believe in the BOY who lives in my HOUSE, he is wonderful and he deserves my devotion. It's just that sometimes you get faced with certain terminology and you wonder if you're just lost---thank you for helping me get back on track.

[CarrieK]

I am loving the success stories on this post! Awesome!

Something I'd like to share that I have on my facebook page:

If we take people as we find them, we may make them worse,
but if we treat them as though they are what they should be,
we help them to become what
they are capable of becoming

-Johann Wolfgang Von Goethe-

[Linda on the move]

No one has a clue what your child can do. One of my friends was told that her son would never speak, but he is turning 6 this summer and learning to talk. He repeats back things he hears and can answer yes/no questions. She was told only a couple of years ago that he would never reach this level. His speech is so clear, even though it is limited, that strangers don't notice that he has autism.

No one knows what your child will be like when he is 6, much less 16 or 26..

Have you reach anything by Temple about her life? She was very low functioning as a small child.

There is really a fuzzy line between "autism" and PDD-NOS, and your child could move. My DD is 13, and most the kids I know her age and not still with the same dx they had when they were 3.

[HarperRose]

I love the support I get here. I love seeing everyone support other parents who are experiencing what we've all experienced.



I can't even add anything to what they've already told you, but I just have to say .

[Casha'sMommy]

s
Have you read this?
http://www.our-kids.org/Archives/Holland.html
If not, please do. If you have, please read it again.

Our sn children can only reach goals as high as are set for them. I believe in having realistic, everyday kinds of goals as well as dream goals.
Our dd has reached and far surpassed what was thought capable of a child with her degree of hearing loss. Had I followed what was told to me by the professionals in our lives I don't know where our dd would be right now.
Never let go of the dreams you have for your child, they're important to you and your lo.

GL and more s

[Fay]

No one knows which ASD kids will be able to live independent and fullfilling adult lives. The evaluators have to give a worst-case scenario to prepare you for that possibility. It's hard to hear. That was the one aspect of my DS1's dx that made me cry. Some kids like Temple Grandin start off with a poor prognosis, but with good old autistic stick-to-it-tiveness, they become successful adults. Other kids start of with a dx of "mild" or High-Functioning" autism and a hopeful prognosis, but can't graduate high school or hold down a job or get their own apartment. It's a difficult journey for both parent & child.

[LynnS6]

I think the unknown outcomes are really hard to deal with. It would be nice if someone could say "this is where he'll be in 3 years, in 6 and in 10."

I'm pretty sure there's one mom who posts here who has a child that a doctor said would never talk. He's currently doing well in school and reading. He still has issues related to autism, so it's not smooth sailing, but he's come a huge way from initial diagnosis to now. Kids can make huge strides.

[SiobhanAoife]

My daughter doesn't have autism, she has a completely different situation, a genetic disease, but what I have to tell you is this: don't internalize any of the doom and gloom you get in handouts when you receive a diagnosis. The standard handouts and spiel that I got when my daughter was diagnosed sent me home thinking she'd be dead by her 30s. Now they are saying that she is likely to not even have any symptoms until her 30s, and perhaps never. So I am totally with you on the horrible grief you have when you read the prefab prepare-for-the-worst text on a handout. But I echo everyone above who has said, that's not what you have to care about and pay attention to - your child is. You aren't going to get a textbook outcome, you're going to get your son's own individual life. I hope it is a gloriously happy story.