Where to start? Possible ASD/Aspergers - Mothering Forums

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#1 of 8 Old 06-24-2014, 06:35 PM - Thread Starter
 
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Where to start? Possible ASD/Aspergers

My son is 4 1/2 and we've known about his sensory issues for the last couple of years and in the last year have started to suspect Asperger Syndrome/ASD.

I am just feeling so overwhelmed about where to start and what to do. I'm very nervous about labeling and any harm that might cause.

He starts Kindergarten in a little over a year. In my town they're all full-time, I have no clue how he's going to cope with that. I know a lot of development can happen in a year, but he does seem different than the other kids his age. He's in preschool 3 mornings/week but he goes to a very low structure "school" because it's the only one that allows a child who still has potty accidents. (I've noticed it tends to attract kids similar to him, probably for that reason)

Here's what we've done so far:

---At 2.5yo I took him to be evaluated at this early intervention place because I felt like his speech was delayed compared to kids his age and because of some sensory things. He qualified for services and someone came to our house once a month to work with him. They pretty much just focused on fine motor skills and after a few months we ended up stopping because it just seems kind of pointless and wasn't helping with what I had taken him there for.

---At 3.5yo His preschool and an extended family member shared concerns of sensory processing disorder and asperger's. I took my son to a private OT. She agreed that he would benefit from a full evaluation. She doesn't bill insurance and it was more $ than we could afford at the time, we hesitated and kind of put it off....partly out of fear/nervousness/avoidance on our part and then just life busy-ness.

---At 4yo we had a well child check with his pediatrician. She signed him up to be evaluated by an OT and speech therapist at the hospital
...as well as a clinic that diagnoses children for ASD and a bunch of other things. Our experience with the hospital therapists has just seemed rushed/busy/non-effective/not very helpful/a waste of time. ....especially compared to the experience shared by someone I spoke with in my town, that went the private OT and child psychologist route.

Now I don't know what to do. I don't know if I should go ahead with the meeting that is attempting to get a diagnosis or if I should avoid labeling right now and focus on therapies. (OT and psychologist) The group that is doing the diagnosing is through the hospital and based on my experience with the hospital therapists I'm just nervous that we're going to get a big fat scary label and a bunch of non-effective help.
Are private therapists generally better than the hospital ones?
Say he does have high functioning ASD....what if a person just focused on therapies to help with symptoms and bypassed the labeling? We suspect that my husband also has Aspergers and he went his whole life without a label. He's successful as an adult and says that he probably would have just benefited from some help with a few things, but is glad that he was never formally diagnoses. We're just nervous that everyone, including himself, is going to view/treat him differently with a label, and that it's maybe not necessary.

Any good books I should read? (or ones to avoid?) I scoured Amazon and put about 10 or so on my wishlist that looked like they were helpful for parents.

I'd love to hear any and all advice and thoughts. I have no one to talk to in real life about this. All of my friends seem to have these super "easy" kids and have no idea what I'm talking about. Ok, btdt moms....let me have it.

Thank you so much. Feeling very lost at the moment.

I didn't list symptoms/specific issues because I feel like I already wrote enough, but if that would be helpful for advice giving, please let me know.

Last edited by GuavaGirl; 06-24-2014 at 06:50 PM.
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#2 of 8 Old 06-25-2014, 10:28 AM
 
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There was recently a thread on the learning at school board about the pros and cons of labeling. You might find it interesting.

labels in school - good or bad?

Some of your questions are very specific to where you are -- I can't help you figure out what are the best therapies where you are. Here, we have excellent therapies privately, which are sometimes based in hospitals. It just means it is being paid for by insurance or out of pocket rather than through the public school or health system. My DD had EXCELLENT therapy through a hospital which our insurance paid for.

Check your public library for books. Request they get books from other library systems if they don't have them in their system.

My two top book recommendations for you are:
"The Out of Sync Child" and "Quirky Kids"


My DD's dx is PDD-NOS, which is an autism spectrum disorder. I suspect that if my DH were a child now in the US, he would be labeled with something. The world isn't what it used to be, and while some therapies, especially when children are preschool age, don't depend on therapies, many, many accommodations and therapies are ONLY available for children who have a diagnosis.

but everything has pros and cons  shrug.gif

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#3 of 8 Old 06-25-2014, 04:57 PM
 
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Also, as far a child seeing themselves through the lens of their diagnosis, I used to have the same fear and tried to shelter my DD. Finally, when she was 12 there was just no way around it any more. For her needs to be meet, she HAD to know.

The most surprising thing happened. She started feeling better about herself. For the first couple of weeks, she would look at me and say, "So I'm completely normal for someone with PDD-NOS?" I would answer yes. It gave her such peace. She already KNEW that she was different from most people, but she didn't know how or why, and she had no language to discuss it. Now, she knew that there were other people like her, and that there wasn't anything "wrong" with her. She is just different, and in a very specific way. She become very interested in Temple Grandin.

I have no idea if your son will eventually qualify for a diagnosis, or what that diagnosis would be. However, if he is different enough to qualify, then I suspect it is in his best interest to have it. Partly for accommodations at school, and partly as a very clear message from you and dad that he is OK. OK is a really big place, much bigger than I used to think. You can have autism and be OK. You can have Asperger's and be OK. A label isn't a message that something is *wrong* it is a term that gives the ability to talk about what it is going on, and what might be helpful.

but everything has pros and cons  shrug.gif


Last edited by Linda on the move; 06-26-2014 at 09:49 PM. Reason: I didn't mean to quote myself
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#4 of 8 Old 06-25-2014, 06:27 PM
 
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I very likely have Asperger's and have also been diagnosed with ADHD. I'm 46 and I wish I had been diagnosed as a kid.
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#5 of 8 Old 06-26-2014, 08:51 PM - Thread Starter
 
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Linda on the move: Thank you for your insight. I will look into those books. ...and as far as how the child sees their diagnosis, I hadn't thought about it that way, but it makes a lot of sense. I felt similarly when I was finally diagnosed with ADHD as an adult. Well, at first it felt a little sad, but after that it was relief....and finally being able to get rid of that feeling that I just must be a crappy person that sucks at life. Thank you.
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#6 of 8 Old 06-26-2014, 08:51 PM - Thread Starter
 
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Polliwog: I appreciate your input. I'd love to hear more about why you wish you would have been diagnosed as a kid. Thank you.
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#7 of 8 Old 06-26-2014, 09:58 PM
 
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Another thing -- I now work at a school with special needs kids. For those kids with special needs who are required to take the standardized test (the high functioning kids) we can give them SO MANY accommodations. They can take the test in a small group, with a familiar tester, with frequent breaks. They are untimed. They have have questions (other than reading comprehension) read to them. Its a pretty sweet deal.

I think that the ways school have changed mean that kids who could have gone through 20-30 years ago with no issues now could really use accommodations. On the plus side, the way special needs are viewed and dealt with has really progressed.

but everything has pros and cons  shrug.gif

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#8 of 8 Old 07-01-2014, 05:43 PM
 
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Quote:
Originally Posted by GuavaGirl View Post
My son is 4 1/2 and we've known about his sensory issues for the last couple of years and in the last year have started to suspect Asperger Syndrome/ASD.

I am just feeling so overwhelmed about where to start and what to do. I'm very nervous about labeling and any harm that might cause.

He starts Kindergarten in a little over a year. In my town they're all full-time, I have no clue how he's going to cope with that. I know a lot of development can happen in a year, but he does seem different than the other kids his age. He's in preschool 3 mornings/week but he goes to a very low structure "school" because it's the only one that allows a child who still has potty accidents. (I've noticed it tends to attract kids similar to him, probably for that reason)

Here's what we've done so far:

---At 2.5yo I took him to be evaluated at this early intervention place because I felt like his speech was delayed compared to kids his age and because of some sensory things. He qualified for services and someone came to our house once a month to work with him. They pretty much just focused on fine motor skills and after a few months we ended up stopping because it just seems kind of pointless and wasn't helping with what I had taken him there for.

---At 3.5yo His preschool and an extended family member shared concerns of sensory processing disorder and asperger's. I took my son to a private OT. She agreed that he would benefit from a full evaluation. She doesn't bill insurance and it was more $ than we could afford at the time, we hesitated and kind of put it off....partly out of fear/nervousness/avoidance on our part and then just life busy-ness.

---At 4yo we had a well child check with his pediatrician. She signed him up to be evaluated by an OT and speech therapist at the hospital
...as well as a clinic that diagnoses children for ASD and a bunch of other things. Our experience with the hospital therapists has just seemed rushed/busy/non-effective/not very helpful/a waste of time. ....especially compared to the experience shared by someone I spoke with in my town, that went the private OT and child psychologist route.

Now I don't know what to do. I don't know if I should go ahead with the meeting that is attempting to get a diagnosis or if I should avoid labeling right now and focus on therapies. (OT and psychologist) The group that is doing the diagnosing is through the hospital and based on my experience with the hospital therapists I'm just nervous that we're going to get a big fat scary label and a bunch of non-effective help.
Are private therapists generally better than the hospital ones?
Say he does have high functioning ASD....what if a person just focused on therapies to help with symptoms and bypassed the labeling? We suspect that my husband also has Aspergers and he went his whole life without a label. He's successful as an adult and says that he probably would have just benefited from some help with a few things, but is glad that he was never formally diagnoses. We're just nervous that everyone, including himself, is going to view/treat him differently with a label, and that it's maybe not necessary.

Any good books I should read? (or ones to avoid?) I scoured Amazon and put about 10 or so on my wishlist that looked like they were helpful for parents.

I'd love to hear any and all advice and thoughts. I have no one to talk to in real life about this. All of my friends seem to have these super "easy" kids and have no idea what I'm talking about. Ok, btdt moms....let me have it.

Thank you so much. Feeling very lost at the moment.

I didn't list symptoms/specific issues because I feel like I already wrote enough, but if that would be helpful for advice giving, please let me know.
Hello There - It's very late here in the UK (or should I say early). I am just another parent that has had similar experiences to you. I have a book recommendation for you which will open your mind up to new possibilities of how to approach things "Disconnected Kids: The Groundbreaking Brain Balance Program for Children with Autism, ADHD, Dyslexia, and Other Neurological Disorders". It is a natural way to address any difficulties without the need for any medication - which is bound to be suggested to you by some teacher/ doctor / psychologist at some point. It's just some extra information that will help you make a more informed choice which is right for you and your family.

The latest scientific thinking out there is that all these classic 'labels' we give children; Autism, Aspergers, ADHD etc.(aside from serious disabilities and diseases) have a common link in the development (or delayed development) of the nervous system and the efficiency with which the two halves of the brain communicate. The idea is that the brain is able to change (Neuroplasticity) and affect positive changes to behavioural, sensory, learning challenges etc. through physical and cognitive exercises. You may find that you have to pursue this through 'alternative practitioners' or 'Learning Centres' rather than the mainstream medical channels.

In the United States, I am aware of Brain Balance, Brain Highways and there are some others - the names escape me -(variously centre based or online)


Also check out whether your child has retained any primitive reflexes. Google 'Primitive Reflexes' to see what these are and how retaining them can affect a child's development. This is a good place to start and much progress can be garnered from a daily 10-15 minute exercise programme over a number of months. In the UK where I am, I like this website for information on Primitive Reflexes www.suehyland.co.uk

Anyway, I'm rambling now. Hope this helps!
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