A question for parents of children on the autism spectrum and/or with ADD/ADHD

[Nakia]

In advance, I would like to say that I am indeed very ignorant about the autism spectrum. I am a bit more familiar with ADD/ADHD because I have a brother who has ADHD. I have read some things online and have "The Out of Sync Child" checked out of the library. I plan to start it tomorrow, but I wanted to ask a couple of questions. I sincerely hope I don't say anything offensive.

 

My oldest dd is really strong-willed, independent, and confident. She came out of the womb that way. She has, in general, pretty easy to parent, other than an occasional battle of wills. IOW, I think she is a pretty "normal" kid.

 

My middle dd is calm, quiet, kind, and very quirky. I suspect she falls somewhere on the autism spectrum. After talking at length the other day with a friend of mine with 2 (out of her 4) children with Asperger's syndrome, it is clearer to me now that she most likely does have a form of autism. I would be happy to expand on the things that make me think this if anyone thinks it would be helpful to the thread. I will say that if she does fall on the AS, it is pretty mild, and so far we are not having a lot of issues with it. Actually, I feel like we are very aware and understanding of her issues and that we are successfully parenting her, lol. I think...

 

My youngest...oh boy. She is a live wire. I actually just posted about her a few weeks ago, and after talking with her pediatrician, we are going to most likely go ahead with and eval to determine if she has ADHD. I honestly do not know how to parent her. She is entirely different from my other two, and she is absolutely exhausting me. She is just a firecracker!

 

Okay, on to my questions. What is the actual benefit of having a formal diagnosis of AS or ADHD, especially if you homeschool? I am trying to think of what we would gain if we did take our middle dd for testing. I feel with our youngest, we need to gain some parenting skills to deal with her, but with my middle, we are doing okay, so is it worth it to have an official diagnosis? Does this even make sense? Like every time I post on a weekend, I am sleep-deprived and probably sound like a raving lunatic. Thanks for taking the time to read through this and offer any advice.

[EKS]

One reason to have a diagnosis is so that when the time comes to take the SAT, you have a history to back up any request you make for accommodations. The College Board doesn't look favorably upon new diagnoses when asking for accommodations.

[Carrie12345]

For me, the main benefit has been narrowing down my search for coping techniques to things highly recommended for kids with ASDs (in my ds's case) or ADHD (in my dd's case). It's also been an emotional relief to know we (meaning me AND the kids) aren't just "crazy". And it's possible that the labels may come in handy down the line if they need real help from outside parties. If that does happen, and an eval hasn't already been done, it can take months and months to get any necessary tests and paperwork completed.

[chiguirre]

If you think you'll want access to services like OT, ST or social skills training, you'll probably need a diagnosis. If you think it's possible your dc may not be able to live independently as an adult, you'll want a dx as soon as possible to create a long paper trail. You might also want a dx to be sure that you know what you're dealing with since many conditions are comorbid or have similar symptoms. And, of course, it helps to know you're not crazy or a bad parent when the going gets tough.

[Geek]

What is the actual benefit of having a formal diagnosis of AS or ADHD, especially if you homeschool?

1) We need help parenting this child. A label helps us to that end.

2) Paper trail.

3) To help us come completely out of denial, especially my husband. He hoped for years that it would all just go away, that our son would outgrow things.

4) We may end up using school services or even enrolling him full time. He is extremely disruptive to our family during school time and it affects the others. We are investigating this currently, and if we find that we agree with how the school will help our son, we will proceed that direction.

 

Like every time I post on a weekend, I am sleep-deprived and probably sound like a raving lunatic.

Just on the weekends? Then you sound better than I do. :D

 

One reason to have a diagnosis is so that when the time comes to take the SAT, you have a history to back up any request you make for accommodations. The College Board doesn't look favorably upon new diagnoses when asking for accommodations.

This, plus I just want a paper trail, period. My ASD brother had a lot of trouble with the law in high school, and he is the one who has since encouraged us to have a paper trail for our son.

 

For me, the main benefit has been narrowing down my search for coping techniques to things highly recommended for kids with ASDs (in my ds's case) or ADHD (in my dd's case). It's also been an emotional relief to know we (meaning me AND the kids) aren't just "crazy". And it's possible that the labels may come in handy down the line if they need real help from outside parties. If that does happen, and an eval hasn't already been done, it can take months and months to get any necessary tests and paperwork completed.

This, especially the bolded.

[Nakia]

One reason to have a diagnosis is so that when the time comes to take the SAT, you have a history to back up any request you make for accommodations. The College Board doesn't look favorably upon new diagnoses when asking for accommodations.

 

Thank you! That is exactly the type of information I am looking for. The SAT seems so far off to me that it never even crossed my mind.

 

For me, the main benefit has been narrowing down my search for coping techniques to things highly recommended for kids with ASDs (in my ds's case) or ADHD (in my dd's case). It's also been an emotional relief to know we (meaning me AND the kids) aren't just "crazy". And it's possible that the labels may come in handy down the line if they need real help from outside parties. If that does happen, and an eval hasn't already been done, it can take months and months to get any necessary tests and paperwork completed.

 

Coping techniques and emotional relief are definite pluses! Thank you!

 

If you think you'll want access to services like OT, ST or social skills training, you'll probably need a diagnosis. If you think it's possible your dc may not be able to live independently as an adult, you'll want a dx as soon as possible to create a long paper trail. You might also want a dx to be sure that you know what you're dealing with since many conditions are comorbid or have similar symptoms. And, of course, it helps to know you're not crazy or a bad parent when the going gets tough.

 

I don't have any reason to believe that they won't be able to live independently as an adult. I'm not sure about OT, ST, or social skills training. It does seem we are doing A LOT of social skills training with both of them. Thank you, especially for the bolded.

 

 

1) We need help parenting this child. A label helps us to that end.

2) Paper trail.

3) To help us come completely out of denial, especially my husband. He hoped for years that it would all just go away, that our son would outgrow things.

4) We may end up using school services or even enrolling him full time. He is extremely disruptive to our family during school time and it affects the others. We are investigating this currently, and if we find that we agree with how the school will help our son, we will proceed that direction.

 

Just on the weekends? Then you sound better than I do. :D

 

This, plus I just want a paper trail, period. My ASD brother had a lot of trouble with the law in high school, and he is the one who has since encouraged us to have a paper trail for our son.

 

This, especially the bolded.

 

Thanks, Geek (can I say it makes me :lol: to type that?)! I was hoping you would chime in on this thread. Thanks so much! My husband definitely tends to be of the "oh, it's just normal kid behavior" mindset, so it would probably be helpful to him. I hadn't thought of that.

[Geek]

My husband definitely tends to be of the "oh, it's just normal kid behavior" mindset, so it would probably be helpful to him. I hadn't thought of that.

Honestly, it was my #1 reason for pursuing testing. My husband needed a wakeup call before it was too late to salvage what was left of their relationship.

 

Keep us posted. :001_smile:

[wapiti]

Just a thought to keep in mind - The Out of Sync Child is about Sensory Processing Disorder. While a lot of kids with sensory issues also have an autism spectrum disorder, there are also a lot of kids with sensory issues who do not have an autism spectrum disorder. Quirkiness, by itself, isn't enough for autism.

 

I highly recommend the Eides' "The Mislabeled Child." It gives an overview of several different LDs, many of which overlap. The book attemps to distinguish among them. Autism, SPD and ADHD are included.

 

The current diagnostic criteria for autism and pdd-nos are listed here: http://www.cdc.gov/ncbddd/autism/hcp-dsm.html. The diagnostic criteria for ADHD are listed here: http://www.cdc.gov/ncbddd/adhd/diagnosis.html For testing, I would seek a provider who is very experienced at dealing with both adhd and autism. Also, don't forget to visit the Special Needs board.

 

Are there academic concerns?

 

Good luck getting to the bottom of things!! :)

[Murmer]

The label helps to reframe our daughter...knowing she has ADHD has helped me be a better parent because I can differentiate between naughty behavior and ADHD/SPD caused actions. It has also helped reframe other's thoughts about our child...until we got a diagnosis people just avoided our dd because she was a "bad" kid. Now when I say she has a disability called ADHD people are more likely to expect the worst and be pleasantly surprised when she is not completely out of control for them. We have also had problems with things like sports/art classes and find that saying she has ADHD helps them to be more willing to work with us.

[Desert Strawberry]

My son sounds more like your 2nd child. Quiet, and mild. I have a therapy background-including sensory OT. I consulted unofficially with others in the therapy field, his ped, as well as other parents of sensory and ASD children and relied heavily on Out-of-Sync Child, Sensational Kids and Out-of-Sync-Child Has Fun to plan a therapeutic program for him. I felt comfortable and confident that I could do so effectively.

 

4 years later, he is symptom-free. I think I did a pretty darned good job. :D

 

If I had not had the background that I did, and my ped's blessing to continue the therapy on my own without a diagnosis, or if I had wanted to access outside therapies (which were not available to my child at the time), or if his case had been more severe, I would have persued a diagnosis.

 

My advice is to read the books and see what you think. If you feel that you need more help, you will need a diagnosis to get it.