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-   -   Child with Autism - Difference in interaction with parent and others (http://www.mothering.com/forum/157-special-needs-parenting/1365320-child-autism-difference-interaction-parent-others.html)

Eloisa 10-08-2012 08:21 PM

My little boy (4 in Jan), was diagnosed with Autism Spectrum Disorder in June this year. He's considered 'High Functioning' Being very verbal, and no developmental delays.L

Last month we went to see a Psychologist who treats children with Autism, specifically. He was well educated, had a lot of experience, and seemed to be a genuinely nice person. But, during our session, he made it very clear that he didn't feel DS had Autism. Even saying at one point 'Did you ever consider that he may have just been a high needs child?'

Now, DS has come in leaps and bounds since starting a low sals/amine diet, and now GaPS. But there a still many things he has a lot of difficulty with, interaction with others, needing to control the situation, and calming down after any sort of excitement, being the most prominent.

Now, at this session, DS only interacted with me. His interaction was great, checking in on me, my response to what he was doing, eye contact, smiling etc.
Now even at our most challenging times with DS, where he would respond to all family/friends smile and communications with tears, he still interacted well with me. Reasonably good eye contact, lots of verbal communication etc.

What I'm wondering is. Does your child with ASD act very differently with you than with others? Because DS interacts well with me, but still has a lot of difficulty with others, does that mean he is no longer on the spectrum?

It was such a hard decision for me to make, to have DS diagnosed. I felt so conflicted about giving that label. And had many people telling me not to. But I did, because I felt as though a 'new'. And once we recieved the diagnosis (made by well known professionals, who specifically work with children on the spectrum), it gave me the confirmation, and therefore motivation, to implement these dietary changes.

It's just really thrown me that this person is implying that it was he was misdaignosed, and I'm labeling just a 'high needs' child with Autism.


DanishMom 10-09-2012 05:44 AM

My son is exactly the samme and I do believe it's quite common. My DS has aspergers and is very verbal. His sense of humor is great with me and he understands irony. That is not the case when he interacts with others

I'm sorry you had such a confusing experience. I know how emotionally hard the process of getting a diagnosis is. You are doing the best thing for your boy. Conflicting opinions among professionals doesn't change that.

Hugs mama.

katiecat 10-09-2012 02:23 PM

Yes, for us we have very few issues at home with ds interacting with just dh and me. I think it is mostly because he is comfortable here at home. We've created a home life that is "safe" for him. Not so out in the rest of the world. I have commented to others (ie. at his school) how at home now/with me we can have a change of plans last minute and he handles it beautifully. Not so 3 years ago. But if plans change somewhere else such as at school it can cause him much distress. I have been told that is because he trusts me/us and feels safe with us.

 

Oh, ds is 10 and has Asperger's. I also find a huge difference in eye contact. With me he has no trouble but he definitely doesn't look others in the eye (much). He has told me it's because he is afraid that if he looks others in the eye they will think he loves them. The psychiatrist who diagnosed him said that these children are very smart and can often come up with reasons, whether actually true or not, as to why they do or don't do things.


fizgig 10-09-2012 02:45 PM

This is just my opinion of course, but I think what you are coming into contact with is the fact that even the professionals don't agree on the definitions and boundaries of ASD.  The changes in the diagnostic criteria reflects the fact that there is growing concern that ASD is sometimes being used as a catch all for other delays and disorders that are less well known, less obvious, etc.

 

I think it would at least give me pause to hear that its possible there was a misdiagnosis.  I guess my question for you is - would it change any of the things you are doing?  No matter what the cause, if diet changes are helping then I assume you wouldn't stop just because he lost a label.  If you are getting therapy, if they are helping then of course you would continue.

 

Just to give you a sense of where I'm coming from, our DS (3.5) was given an "autism-like" dx by early intervention, which never seemed quite right to me.  After a series of evals with a psychologist then a developmental ped, the conclusion is that DS is not on the spectrum.  Instead he has a severe language disorder which can have some overlapping red flags but that is missing key ASD features.

 

That process has convinced me of a few things.  1.  Ultimately labels don't matter as long as I am open to trying therapies and approaches then seeing what actually helps my DS (no matter what the studies or experts say "should" help). 2. The fact that there is a lot of disagreement in the professional world of ASD diagnoses means that we are often left without a clear direction for kids who are in the gray area along the edges of ASD.  For us that means I take what helps and leave behind what doesn't.  So, if I needed an ASD label for services, I would probably go for it.  If I'm worried an ASD label will hurt DS in a specific setting, I don't bring it up.

 

The last thing I will say - and I apologize if I offend anyone - is that questioning an ASD diagnosis will often be met with a lot of people telling you that you are in denial.  This is so offensive to me I don't even know where to begin.  Like you I worried about labeling DS, but when we decided to go for a dx, I was meticulous, kept notes, a journal, was painfully honest with the people evaluating DS.  It was they who questioned ASD and it was they who eventually settled on something non-ASD, but I STILL have people imply that I have my head in the sand.  I guess my point being, trust your gut and don't listen to us here ;)  No one knows your child better than you and if you strongly believe ASD is the heart of the issue, then I would ignore that guy.  If your gut says there might be something else going on, listen to that to.  Maybe wait a year and go back for another full eval to see what's what?


Eloisa 10-10-2012 03:22 PM

Oh, I am so grateful to have this place and all of you wonderful women to talk to. You're replies have helped me a lot.
 

I guess it's a difficult diagnosis, being that it's very subjective to whomever is doing the diagnosing. You're right in that I need to trust myself. I know that getting the diagnosis was the absolute right thing to do for us. He is doing so beautifully at the moment, and his communication and interaction has come in leaps and bounds. But we still have a way to go. I guess being challenged sometimes is good for us. Reminds us of what our choices/beliefs really are.


Linda on the move 10-10-2012 09:17 PM

Coming late to the party ....

 

This is an excellent thread. it's a good question and there have been some super responses already. My DD just turned 16 and is on the spectrum, and very high functioning. It is super tough to dx children like her, and I felt we got a better picture of what was going on as she got older, was better able to comply with testing, and was observed for more time by a wider range of people, such as happens at school.

 

None the less, I'm still a fan of getting evals when children are young to help hone in on what might help them. It's not perfect, but its the best we can do right now. I see getting an eval as a bit like getting a picture taken -- it kinda shows you want the child looks like now, but you don't expect it to tell you what they will look like in 5 years.

 

Anyway, back to specifics:

Quote:
Originally Posted by Eloisa View Post

Last month we went to see a Psychologist who treats children with Autism, specifically. He was well educated, had a lot of experience, and seemed to be a genuinely nice person. But, during our session, he made it very clear that he didn't feel DS had Autism. Even saying at one point 'Did you ever consider that he may have just been a high needs child?'

....

 

I think his comments were out of line. There is a difference between "seeing" a child and doing an eval. My DD's last eval took a day and a half of testing plus reviewing comments from her teachers and therapists and me filling out zillions of pages of bubble forms. At this point, if some one spent an hour with her and based on that declared she wasn't on the spectrum, I would laugh in their face and say, "yeah, I know she doesn't have classic, profound autism."

 

None the less, I do agree with fizgig that a variety of issues can look similar and be difficult to sort out, esp. when children are young. I've no idea if your child's diagnosis is correct or not. I'm not qualified to answer that question.

 

What I'm wondering is. Does your child with ASD act very differently with you than with others? Because DS interacts well with me, but still has a lot of difficulty with others, does that mean he is no longer on the spectrum?
 

very, very, very different. My DD is quiet at home, but she can speak and often chooses to me, her father, and her sister. Just tonight she had a very animated argument with her sister about how good/bad The Phantom Menace is. But she went for 2 years without speaking to anyone outside of our immediate family. She seldom has panic attacks or meltdowns at home (at this point in her life) but The Outside World is still a very scary place for her.  She can pull off "passing" as neuro typical in some situations, though, and has gotten better as she's gotten older and intellectually understands what behaviors are considered "normal." 

 

It was such a hard decision for me to make, to have DS diagnosed. I felt so conflicted about giving that label.

 

 

I suggest completely framing how you think about this. You did not have your child diagnosed. You had your child EVALUATED. You did not give your child a label. You were open to allowing expects to figure that out and make their best guess based on how he presents right now.

 

 

It is your choice what to do with that information and who to share it with. Not everyone who comes in contact with my DD knows -- it really just depends on the situation and what I feel people need to know. But her teachers and the staff at her school know. She could not get through regular school with regular expectations. That would be completely unreasonable. But she is a bright kid getting a solid education that works for her, and it's only possible because we are honest with ourselves and honest with her teachers.

 

A couple of things about having a 4 year old -- other people's suggestions that my DD's struggles were my fault peaked at about this age. I don't know if it is something about the age, or if I just got thicken skin later and didn't notice so much.

 

When you say "I'm labeling just a 'high needs' child with Autism." it kinda sounds like you might be judging yourself a bit or thinking that you are overshooting. There's no way to know over the internet, but I suspect that isn't true. It sounds like normal parenting techniques just don't have much of an impact. I suspect that you are a really good mom, seeking out a variety of opinions and options for your child, trying to find something that works for him. I  don't think it serves special needs children well, even if they are high functioning, to assume that their challenges are mostly because they are difficult. That kind of thinking would never help a parent get to root causes.


Emmeline II 10-11-2012 04:28 PM

yeahthat.gif

 

When ds was in K we started seeing a family therapist who wanted to play "wait and see" and discourage us from seeing a psychologist or psychiatrist. Had an evaluation with an OT who worked with ASD children and suggested we might want to evaluated for it and explained why (we were already on that path). Then saw a psychiatrist who diagnosed ADHD but not concerned about Asperger's. Several months later ds had a comprehensive evaluation at a developmental clinic at a children's hospital that involved a developmental-behavioral pediatrician, an SLP, a psychologist, and a social worker; plus the teacher bubble forms, parent bubble forms, teacher evals we had done for a therapist, and a 3hr eval with ds AND more bubble forms and interviews.  Apparently the team spent quite a bit of time debating the ASD diagnosis.

 

The point of all of that was to get a better idea of what was going on with ds and to help him--I certainly hoped he would improve between 6y11mo and today! He's always been "better" with me than anyone else. His Nana was next on the list after us, then his primary teacher; but it took 2yrs past his diagnosis for him to make eye contact with his Aunt he saw a little less often then Nana. If he didn't know you at all you probably wouldn't get any response.


crunchy_mommy 10-11-2012 06:01 PM

HUGS. I am dealing with the exact same thing, therapist said he most definitely doesn't have an ASD (after spending less than 2 hours with him, and him having a really great day & under ideal conditions for him). On the one hand, it's just a label, does it really matter? But it's confusing -- not to mention invalidating -- and leaves me uncertain how to proceed. Plus I had just undergone a bit of a grieving process in accepting that DS does have Asperger's, and then just a couple weeks later I am told he does not!

DS is 3.5. He fits virtually every single symptom, but some of it is only evident under certain conditions, or if you are around him enough to really see what's going on. He's incredibly smart and compensates/hides issues pretty well, I think. Bottom line, though, is I'm grateful we have OK insurance so we can get therapy either way, and that we're homeschooling, because it seems a nightmare to get 2 people to agree on a diagnosis for him if it were absolutely necessary for services. *sigh* I am sorry you are dealing with this too, I guess we just have to keep plugging away and advocating for what they need. We are supposed to have a neuropsych eval done for DS, it's a 5-hour comprehensive test, I'm hoping that will provide more definitive insight... are you able to do something like that?

Eloisa 10-12-2012 08:00 PM

Quote:
Originally Posted by Linda on the move View Post

Coming late to the party ....

 

This is an excellent thread. it's a good question and there have been some super responses already. My DD just turned 16 and is on the spectrum, and very high functioning. It is super tough to dx children like her, and I felt we got a better picture of what was going on as she got older, was better able to comply with testing, and was observed for more time by a wider range of people, such as happens at school.

 

None the less, I'm still a fan of getting evals when children are young to help hone in on what might help them. It's not perfect, but its the best we can do right now. I see getting an eval as a bit like getting a picture taken -- it kinda shows you want the child looks like now, but you don't expect it to tell you what they will look like in 5 years.

 

Anyway, back to specifics:

 

I suggest completely framing how you think about this. You did not have your child diagnosed. You had your child EVALUATED. You did not give your child a label. You were open to allowing expects to figure that out and make their best guess based on how he presents right now.

 

 

It is your choice what to do with that information and who to share it with. Not everyone who comes in contact with my DD knows -- it really just depends on the situation and what I feel people need to know. But her teachers and the staff at her school know. She could not get through regular school with regular expectations. That would be completely unreasonable. But she is a bright kid getting a solid education that works for her, and it's only possible because we are honest with ourselves and honest with her teachers.

 

A couple of things about having a 4 year old -- other people's suggestions that my DD's struggles were my fault peaked at about this age. I don't know if it is something about the age, or if I just got thicken skin later and didn't notice so much.

 

When you say "I'm labeling just a 'high needs' child with Autism." it kinda sounds like you might be judging yourself a bit or thinking that you are overshooting. There's no way to know over the internet, but I suspect that isn't true. It sounds like normal parenting techniques just don't have much of an impact. I suspect that you are a really good mom, seeking out a variety of opinions and options for your child, trying to find something that works for him. I  don't think it serves special needs children well, even if they are high functioning, to assume that their challenges are mostly because they are difficult. That kind of thinking would never help a parent get to root causes.

Hi, Linda on the move,

 

You're pretty spot on with much of what you wrote about here. I certainly judge myself a lot, and am frequently worried about 'overshooting'. It took months of stress for me to decide to go for the assessment in the first place. I even cancelled the original appointment. It was only because the feeling never went away, no matter how much I reasoned otherwise. I just *knew*.

 

Having other people doubt me always throws me much more than I would like. And this situation was exactly the same. I know the this guy wasn't exactly making an informed judgement, having only spent 1 hour watching my child interact with me (but doing no interaction himself)

 

Also, it's really helpful for me to hear from others about the judgement people had regarding your parenting, supposedly, causing certain, behaviours, I guess you could call it. I know it doesn't matter what others think. But it's hard, as a mother, to have people telling me I don't know my child.

 

Quote:
Originally Posted by Emmeline II View Post

yeahthat.gif

 

When ds was in K we started seeing a family therapist who wanted to play "wait and see" and discourage us from seeing a psychologist or psychiatrist. Had an evaluation with an OT who worked with ASD children and suggested we might want to evaluated for it and explained why (we were already on that path). Then saw a psychiatrist who diagnosed ADHD but not concerned about Asperger's. Several months later ds had a comprehensive evaluation at a developmental clinic at a children's hospital that involved a developmental-behavioral pediatrician, an SLP, a psychologist, and a social worker; plus the teacher bubble forms, parent bubble forms, teacher evals we had done for a therapist, and a 3hr eval with ds AND more bubble forms and interviews.  Apparently the team spent quite a bit of time debating the ASD diagnosis.

 

The point of all of that was to get a better idea of what was going on with ds and to help him--I certainly hoped he would improve between 6y11mo and today! He's always been "better" with me than anyone else. His Nana was next on the list after us, then his primary teacher; but it took 2yrs past his diagnosis for him to make eye contact with his Aunt he saw a little less often then Nana. If he didn't know you at all you probably wouldn't get any response.

See, for my DS. Up until recently, he rarely spoke a word to anyone but me. He did speak to his Dad too, but there were a lot of variables (wouldn't speak first thing in the morning, or having just arrived home etc)

 

This has improved dramatically. Where now he talks and plays with most of my immediate family, and some friends.

 

Sometimes I feel as though he doesn't 'fill all the boxes' for Autism anymore. But then there are still so many things that tell me he is. Sometimes I just find it so damn confusing when everyone has a different opinion about what Autism is. Does having Autism mean being unable to do these things, or just having difficulty. And then, how much difficulty? If DS has no 'issues' half the time, but lots the other half, where does that leave us?

Quote:
Originally Posted by crunchy_mommy View Post

HUGS. I am dealing with the exact same thing, therapist said he most definitely doesn't have an ASD (after spending less than 2 hours with him, and him having a really great day & under ideal conditions for him). On the one hand, it's just a label, does it really matter? But it's confusing -- not to mention invalidating -- and leaves me uncertain how to proceed. Plus I had just undergone a bit of a grieving process in accepting that DS does have Asperger's, and then just a couple weeks later I am told he does not!
DS is 3.5. He fits virtually every single symptom, but some of it is only evident under certain conditions, or if you are around him enough to really see what's going on. He's incredibly smart and compensates/hides issues pretty well, I think. Bottom line, though, is I'm grateful we have OK insurance so we can get therapy either way, and that we're homeschooling, because it seems a nightmare to get 2 people to agree on a diagnosis for him if it were absolutely necessary for services. *sigh* I am sorry you are dealing with this too, I guess we just have to keep plugging away and advocating for what they need. We are supposed to have a neuropsych eval done for DS, it's a 5-hour comprehensive test, I'm hoping that will provide more definitive insight... are you able to do something like that?

So far we have done an hour long eval with a Dev. Ped. And hour with a Psych. And two hours with a Speech Path, who each agreed on the same. I know these people are hugely respected in the field of Autism, and I do think they know what they're talking about. I guess it just through me an awful lot to have another person (who was actually recommended by two of the professionals who did the assessment. It makes me question what exactly Autism is. I've done so much reading. I feel incredibly informed, and yet I still don't quite 'get it'. With DS, the reason I chose to go through the assessment, was more of a feeling, which was backed by additional, symptoms, I guess you might call it. The connection isn't quite right. I'm rambling now, sorry. Still trying to figure it all out.

 

Thank you, all, again for responding. It's nice to have people who get what you're going through.


mopdop2000 10-15-2012 09:14 AM

I totally get what you're going through. When we took DS2 to childrens hospital & returned with a diagnosis of autism, many of the therapists who had been working with him didn't agree. It was so difficult to understand how people could look at the same child and see different issues. However, ds2 has an underlying genetic syndrome he inherited from his birth mum, that explains the autism. There is still a question in my mind as to whether he would have been diagnosed with autism if the genetic testing had been done first, but it ultimately doesn't really make much of a difference. I've found that his teachers know alot more about autism than Fragile X Syndrome so if having the autism diagnosis helps him gain better support and services as he grows up, then I wouldn't want to change it.

 

Your parenting skills aren't the issue here. I believe we get the kiddos God knows we can handle. My DS1 has ADHD and is very energetic, and of course DS2 with Fragile X, autism and ADHD. When I look at other people kids I used to wish that I could take my kiddos into the bank with me, or trust them to behave in the waiting room while I saw the Dr, however I have now changed my tune. I tell myself that kids who do those things are a little boring, and my high energy kids keep life exciting :) I am sure it's just my way of handling life, and there certainly are times I wish my kids were the 'boring' ones, but we all have our coping strategies right??? :)



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