Re: Intro and Sharing a Frustration

[Guest guest]

I don't listen to people who say my son doesn't have Aspergers. I know he does , the evaluation process was lengthy and he met diagnostic criteria at age 6. Now he's almost 10 and depending on the situation you may or may not see any signs that he is anything other than a normal boy. This makes me happy. We've worked really , really hard to help him progress. I'm glad he was diagnosed early enough that the interventions we did made a huge difference. I was told at one time that later in life outsiders would not know he had a disorder and I didn't believe them. If it's any comfort, his classroom teacher in fourth grade immediatly knew he was special needs, even without being told. She was willing to learn all and any information and techniques I could tell her about. She attended an Asperger's learning

seminar and wrote me an email that said we are very lucky he is doing as well as he is and she gave credit to our hard work. So maybe not everyone will believe you, but stick to your guns and tell people who need to know what they can do to work with your daughter.Heide"Only those who risk going too far can possibly find out how far they can go.â€~ T.S. Elliot

From: Jen <mymail@...>Subject: ( ) Intro and Sharing a Frustration Date: Friday, March 20, 2009, 8:27 AM

I'm new to the group so short and sweet intro - I'm mom to a 4 year old dd who was dx'd with autism at a year old. The dx was based on the fact she'd quit talking, made no eye contact, had no desire to be held or interact with us, couldn't interact with her environment without melting down completely. She's actually doing quite well. We have a daily routine we still follow - it seems to prepare her for the day. And we have several coping techniques we use when she's struggling and getting overwhelmed. We work daily on making eye contact - as long as we do that she usually will give me brief bits of eye contact during the day. If I don't push the issue by working with her first thing in the morning she will avoid eye contact all day. Once she regained her words we found that she'd frequently quit speaking again anytime we did anything highly stressful such as a long road trip. That seems to have subsided. There are times she

goes into a mode where I can't understand her at all if she's become stressed.She's certainly not an extreme case - but I do know we work really hard helping her do well and equipping her to function. And we are right there with a safety net to support her when she's overwhelmed. We also have 4 other children. All of our children were adopted through foster care and all of them have their share of issues. 4 of our children have some sort of sensory issue, including our dd w/the autism dx. But 2 of the other 3 haven't been anything like my 4 year old dd. (The 4th child - well to be honest, part of me wonders if an autism dx wouldn't fit her). The big differences between my other children with sensory dxs and my dd with autism would be these:1. The other children don't lose ground as quickly and often as 4 year old dd. When they make progress it's there and usually that issue becomes a non-issue after awhile.2. Overall they

make friends and play and can have a great time. 4 year old dd can't. 3. The other 2 interact well with me and always have. With 4 year old dd we went through a substantial period of time when holding her was a chore - I meant nothing to her and she didn't really care if I held her at all. She never made eye contact. Now she does like to be with me actually she wants to be with me non-stop but on her own terms and in her own space. She is right there beside me engaged in her type of play most of the day. And if we are at a playground or something she's either at my feet or under the playground while the rest of my children are out making friends and playing all over. If my 4 year old can do a slide again and again she enjoys that. She also likes the swings. Now at home with just her siblings there are times when my 4 year old dd will go and play. And there are some things they play that she enjoys. It's fairly predictable activities. She

knows exactly what to expect when they play those things. She does like when my oldest lets her build with him. She builds one lego pyramid after another. Okay - I know this was incredibly long. Sorry. But here's my source frustration.I'm constantly hearing my dd can't be autistic. She's be misdx'd. Every therapist she's had says something to that effect as does our family members and friends. Overall their reasoning is she's doing too well to have autism. The latest is that she's outgrowing her issues (and it's true maybe, or at least they are becoming more manageable) so she can't have autism. I was told she does have a sensory modulation disorder but not autism. The person who said this, if I understood correctly and I'm pretty sure I did, basically was expressing that she believes a very large number of people with sensory modulation disorder are misdx'd as having autism. So what say you? LOL. Am I the only one running into

this. Should I go with what the therapist says and assume she doesn't have autism? We went back to an autism clinic a few times and I expressed this there - but to be honest it was such a frantic experience and everyone was running so far behind no one ever addressed this any of the times I went. It was totally frustrating.I know dd is doing well and I feel very blessed. And I suppose it really doesn't matter what she does or doesn't have as long as we are finding ways to help her. But this whole situation just frustrates me.Again, sorry for the incredibly long post. Jen

[Guest guest]

> I'm constantly hearing my dd can't be autistic. She's be misdx'd. Every

therapist she's had says something to that effect as does our family members

and friends. Overall their reasoning is she's doing too well to have autism.

The latest is that she's outgrowing her issues (and it's true maybe, or at least

they are becoming more manageable) so she can't have autism.

Jen, this is par for the course with an autistic child. Even professionals

often are not as familiar with the diagnostic criteria as they should be. What

will help you is becoming familiar with the diagnostic criteria yourself, so you

can tell if other people's comments are warranted or not. Here is a link:

http://www.autism-watch.org/general/dsm.shtml

Autism is a permanent neurological condition. The whole point of intervention

and therapy is to help the child do the best they can despite of it. The child

is supposed to get better. Some autistics get to the point where other people

would never know they are autistic. But it doesn't mean their autism has gone

away; it means they've learned strategies to live with it. Are you sure these

people are serious? It sounds to me like they may just be talking to pass the

time, not really thinking about what they are saying.

> We went back to an autism clinic a few times and I expressed this there - but

to be honest it was such a frantic experience and everyone was running so far

behind no one ever addressed this any of the times I went. It was totally

frustrating.

If I were you, and this is really causing this much trouble, I would call them

back and pin them down on this. Didn't they give you a final report? It should

explicitly say what your daughter's dx is (and a whole lot more), how firm it is

and where she is on the spectrum. To be honest, your confusion suggests that

you have not read your daughter's report from the autism clinic. If you don't

understand it, you need to make an appointment and have them explain it to you.

This should not cost extra, as it should have been done when the evaluation was

done.

> I know dd is doing well and I feel very blessed. And I suppose it really

doesn't matter what she does or doesn't have as long as we are finding ways to

help her. But this whole situation just frustrates me.

Well, one thing to consider... It does matter to the school district what she

has or doesn't have when they are deciding whether to continue services or not.

If any of these therapists declaring she is not autistic are connected with the

school district--beware. They may be setting you up to discontinue services.

It is great to hear your daughter is doing so well--and you are doing a GREAT

JOB yourself!!!

Ruth

[Guest guest]

Hi, I don't believe it would be Asperger's, since this is usually not diagnosed

until the child is around 7 years old and the social problems with peers arise.

To me, there sure are a lot of autism symptoms described by Jen. Problems with

eye-contact, loss of speech, senso, thrives on routine, losing skills, not

playing with same aged peers,...

I also feel that a correct diagnosis is important, because that is how you get

services, especially in the school system. You also need to think about the

influence of any diagnosis on insurability. For us, getting a diagnosis was also

the beginning of a " healing " process. It helped us to start looking for more

help, to accept that our children are different, but just as valuable, that they

learn differently and need help, that it is not our parenting skills that make

them " difficult " . (As I have been told by their grandma that it was my fault

that the kids didn't want to hug her goodbye)

A paediatrician (or developmental paediatrician) can do an ADOS testing

(http://en.wikipedia.org/wiki/Autism_Diagnostic_Observation_Schedule)

to diagnose or rule out any Autism Spectrum Disorder (in conjunction with

history description).

My middle son's therapists and teachers all doubted he had an ASD. After being

tested with ADOS, he got the dx of classical autism. Everyone was tricked by his

average intelligence and by the fact that he wants to make social contact, but

he doesn't have the skills, and seems unable to learn them. He is great when

adults interact with him, because they ar all so accommodating. But when he is

with peers, he is unable to connect with others. He does have language and

speech issues (stopped babbling at 7 months or so), and has also had trouble

with losing learned skills. We have been in therapy since he was 1.5 yo, but he

has only had his dx since he was 6.

My oldest son has a dx of Asperger's, and he wasn't diagnosed until he was

almost 8yo. In the younger years he was attached to a particular toy and he had

lots of tantrums, even after age 4. We noticed different interests in grade 1,

socially unable to integrate with peers or adults.

Our youngest is 5, and NT I believe. What a difference in parenting!

Jen, I would go looking for a medical professional to schedule an ADOS testing.

In the meantime I would take note of all the quirky things you pick up, with

dates ( when she started putting words together, what senso issues, food issues,

social contacts,...) as these are all questions that come up in the interview,

and it is easier if you have it all on paper (especially if you have more than 1

child with special needs).

You are on the right track by wanting to find out... Take care,

Veerle.

>

>

> From: Jen <mymail@...>

> Subject: ( ) Intro and Sharing a Frustration

>

> Date: Friday, March 20, 2009, 9:27 AM

>

>

>

>

>

>

> I'm new to the group so short and sweet intro - I'm mom to a 4 year old dd who

was dx'd with autism at a year old. The dx was based on the fact she'd quit

talking, made no eye contact, had no desire to be held or interact with us,

couldn't interact with her environment without melting down completely.

>

> She's actually doing quite well. We have a daily routine we still follow - it

seems to prepare her for the day. And we have several coping techniques we use

when she's struggling and getting overwhelmed.

>

> We work daily on making eye contact - as long as we do that she usually will

give me brief bits of eye contact during the day. If I don't push the issue by

working with her first thing in the morning she will avoid eye contact all day.

>

> Once she regained her words we found that she'd frequently quit speaking again

anytime we did anything highly stressful such as a long road trip. That seems to

have subsided. There are times she goes into a mode where I can't understand her

at all if she's become stressed.

>

> She's certainly not an extreme case - but I do know we work really hard

helping her do well and equipping her to function. And we are right there with a

safety net to support her when she's overwhelmed.

>

> We also have 4 other children. All of our children were adopted through foster

care and all of them have their share of issues. 4 of our children have some

sort of sensory issue, including our dd w/the autism dx. But 2 of the other 3

haven't been anything like my 4 year old dd. (The 4th child - well to be honest,

part of me wonders if an autism dx wouldn't fit her).

>

> The big differences between my other children with sensory dxs and my dd with

autism would be these:

> 1. The other children don't lose ground as quickly and often as 4 year old dd.

When they make progress it's there and usually that issue becomes a non-issue

after awhile.

> 2. Overall they make friends and play and can have a great time. 4 year old dd

can't.

> 3. The other 2 interact well with me and always have. With 4 year old dd we

went through a substantial period of time when holding her was a chore - I meant

nothing to her and she didn't really care if I held her at all. She never made

eye contact. Now she does like to be with me actually she wants to be with me

non-stop but on her own terms and in her own space. She is right there beside me

engaged in her type of play most of the day. And if we are at a playground or

something she's either at my feet or under the playground while the rest of my

children are out making friends and playing all over. If my 4 year old can do a

slide again and again she enjoys that. She also likes the swings.

>

> Now at home with just her siblings there are times when my 4 year old dd will

go and play. And there are some things they play that she enjoys. It's fairly

predictable activities. She knows exactly what to expect when they play those

things. She does like when my oldest lets her build with him. She builds one

lego pyramid after another.

>

> Okay - I know this was incredibly long. Sorry. But here's my source

frustration.

>

> I'm constantly hearing my dd can't be autistic. She's be misdx'd. Every

therapist she's had says something to that effect as does our family members and

friends. Overall their reasoning is she's doing too well to have autism. The

latest is that she's outgrowing her issues (and it's true maybe, or at least

they are becoming more manageable) so she can't have autism. I was told she does

have a sensory modulation disorder but not autism. The person who said this, if

I understood correctly and I'm pretty sure I did, basically was expressing that

she believes a very large number of people with sensory modulation disorder are

misdx'd as having autism.

>

> So what say you? LOL. Am I the only one running into this. Should I go with

what the therapist says and assume she doesn't have autism? We went back to an

autism clinic a few times and I expressed this there - but to be honest it was

such a frantic experience and everyone was running so far behind no one ever

addressed this any of the times I went. It was totally frustrating.

>

> I know dd is doing well and I feel very blessed. And I suppose it really

doesn't matter what she does or doesn't have as long as we are finding ways to

help her. But this whole situation just frustrates me.

>

> Again, sorry for the incredibly long post.

>

> Jen

>

[Guest guest]

Welcome to the group, Jen! I am slow in reading posts and just now got to yours!

I think most people do not understand what autism is. Also, remember that autism is not a disability that is frozen in time - these people are not stagnant. It used to be thought that they could not be helped. So they put these people in institutions, warehoused them. They were not given therapies, were not exposed to experiences or medications that might have helped them.

But now we know there are lots of therapies out there to be tried, meds that can help. And improvement is made all the time. People in general are not frozen in one place - we all develop and grow over time. We are not the same people we were at age 1 or 3 or 15. In short, "development happens." lol. And so this is true for people with autism as well. I think this is the important point to remember with your dd. Imagine if you had been told she has autism and then you did nothing. Where would she be right now? Compare that to all the work you are putting in to keep her working at things, practicing skills that are important, exposing her to things even when it's hard to do so. Of course, with a lot of work, she will improve! She will make gains along the way and develop.

My two ds's have HFA and they both started out not able to talk and autistic. I don't pretend to know why some of these kids take a jump forward in development and become high functioning vs the ones who struggle forever and never reach any level of independence. But it happens. It seems like your dd is one of the ones who will be able to move along a higher trajectory. That does not mean she doesn't have autism. It means things are connecting and with the work you are doing, expect more things to fall into place over time as well!

The more you learn about autism and AS, the more you will find confidence in dealing with your dd but also, in dealing with people who want to question or argue her dx. I mean, sometimes it is just a matter of flipping the statement around with some of these things. When someone says a lot of people dx'd with autism really "just" have sensory problems - well, to me that is kind of a duh thing. All people with autism will have sensory problems. So you can select some who have advanced nicely and say, "See, they never REALLy had autism." if you want to. I don't agree with that. Because I think it invalidates a lot of hard work, a lot of good luck and denies the fact that people can develop and improve over time. And why do people want to argue these things? If you saw competent people to make a dx and you agree that it fits, then people need to find out more about autism and learn ways that they can help her. Not sit around arguing in the land of denial. You might have to say "autism" a lot before people come to grips with it.

Anyway, a belated welcome to our group and also, don't apologize for posting! That's what we do here. So long or short, people read and think and reply. Feel free to jump in anywhere!

Roxanna

"Suppose you were an idiot. And suppose you were a member of Congress. But I repeat myself." ~ Mark Twain

( ) Intro and Sharing a Frustration

I'm new to the group so short and sweet intro - I'm mom to a 4 year old dd who was dx'd with autism at a year old. The dx was based on the fact she'd quit talking, made no eye contact, had no desire to be held or interact with us, couldn't interact with her environment without melting down completely. She's actually doing quite well. We have a daily routine we still follow - it seems to prepare her for the day. And we have several coping techniques we use when she's struggling and getting overwhelmed. We work daily on making eye contact - as long as we do that she usually will give me brief bits of eye contact during the day. If I don't push the issue by working with her first thing in the morning she will avoid eye contact all day. Once she regained her words we found that she'd frequently quit speaking again anytime we did anything highly stressful such as a long road trip. That seems to have subsided. There are times she goes into a mode where I can't understand her at all if she's become stressed.She's certainly not an extreme case - but I do know we work really hard helping her do well and equipping her to function. And we are right there with a safety net to support her when she's overwhelmed. We also have 4 other children. All of our children were adopted through foster care and all of them have their share of issues. 4 of our children have some sort of sensory issue, including our dd w/the autism dx. But 2 of the other 3 haven't been anything like my 4 year old dd. (The 4th child - well to be honest, part of me wonders if an autism dx wouldn't fit her). The big differences between my other children with sensory dxs and my dd with autism would be these:1. The other children don't lose ground as quickly and often as 4 year old dd. When they make progress it's there and usually that issue becomes a non-issue after awhile.2. Overall they make friends and play and can have a great time. 4 year old dd can't. 3. The other 2 interact well with me and always have. With 4 year old dd we went through a substantial period of time when holding her was a chore - I meant nothing to her and she didn't really care if I held her at all. She never made eye contact. Now she does like to be with me actually she wants to be with me non-stop but on her own terms and in her own space. She is right there beside me engaged in her type of play most of the day. And if we are at a playground or something she's either at my feet or under the playground while the rest of my children are out making friends and playing all over. If my 4 year old can do a slide again and again she enjoys that. She also likes the swings. Now at home with just her siblings there are times when my 4 year old dd will go and play. And there are some things they play that she enjoys. It's fairly predictable activities. She knows exactly what to expect when they play those things. She does like when my oldest lets her build with him. She builds one lego pyramid after another. Okay - I know this was incredibly long. Sorry. But here's my source frustration.I'm constantly hearing my dd can't be autistic. She's be misdx'd. Every therapist she's had says something to that effect as does our family members and friends. Overall their reasoning is she's doing too well to have autism. The latest is that she's outgrowing her issues (and it's true maybe, or at least they are becoming more manageable) so she can't have autism. I was told she does have a sensory modulation disorder but not autism. The person who said this, if I understood correctly and I'm pretty sure I did, basically was expressing that she believes a very large number of people with sensory modulation disorder are misdx'd as having autism. So what say you? LOL. Am I the only one running into this. Should I go with what the therapist says and assume she doesn't have autism? We went back to an autism clinic a few times and I expressed this there - but to be honest it was such a frantic experience and everyone was running so far behind no one ever addressed this any of the times I went. It was totally frustrating.I know dd is doing well and I feel very blessed. And I suppose it really doesn't matter what she does or doesn't have as long as we are finding ways to help her. But this whole situation just frustrates me.Again, sorry for the incredibly long post. Jen

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