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Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)

Autistic

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amother

Thu, Jan 23 2014, 7:53 pm

Has anyone received this diagnosis for their child, and disagreed? Were you right? I don't believe I am in denial. If this is what we needed to deal with, I would. I just believe this is very off the mark. I will be going for a second opinion. Anyone?

amother

Thu, Jan 23 2014, 8:00 pm

we did and as time passed we disagreed. Slowly bh with a lot of help and siyata dishmaya, he does not have autism. He has some other stuff but not autism.

It is likely that he never had it but his "other things" manifested itself as symptoms of autism and he was so young and not verbal and not exposed to other kids etc…

I would definitely get a second and even third opinion. It may also be mild and helped very much with therapies.

imasinger

Thu, Jan 23 2014, 8:54 pm

Definitely get other opinions. I have heard of people misdiagnosed, and people losing their diagnosis.

But the therapies are very helpful for a number of conditions, so I have heard that in some places, a diagnosis is given to let the families have access to those therapies.

Why don't you think the diagnosis is right?

amother

Thu, Jan 23 2014, 9:05 pm

amother wrote:

Is he/she on the spectrum?

cbg

Thu, Jan 23 2014, 9:23 pm

It is possible that the diagnosis was given so you can receive services.
Early intervention is key here.

I work in special ed. The director of our program was doing extensive research on spectrum disorders. According to her, children with ADD/ADHD should also be placed on the spectrum.

Don't get too hung up on the diagnosis, as long as your child gets the services he needs and improves, that is the most important.

amother

Thu, Jan 23 2014, 9:39 pm

The said child is very personable and verbal, but presents with anxious and ocd type tendencies. Said child also has sensory issues. Intellectually there are no concerns.

amother

Thu, Jan 23 2014, 10:03 pm

I have the same concern with my seven yr old son. very personable, charming, lots of friends, and extremely expressive.

also has anxiety, is very high strung, and some ocd tendencies. got the aspergers label about a year ago and planning to go for second opinion. there are very limited resources for boys with aspergers, so at this point a diagnoses is not so vital for the sake of getting special ed services, but more so for my peace of mind.

Kugglegirl

Fri, Jan 24 2014, 12:53 am

I have a concern with children being over diagnosed with autism.

I have worked with several children with an autism diagnosis that I felt was not an accurate one. These in the last 10-12 years. (in addition to working with children & adults accurately identified as on the autism spectrum.)

But my concern is more for children who are very low functioning cognitively. As well as those with cognitive disability & additional sensory and multiple impairments.

There are a range of behaviors that children who are "low functioning" can exhibit, that may look like autism to most educators & therapist, who have limited experience with children who are very severely cognitive impaired.

OTOH- children who do get labeled with autism may qualify for additional services and this is a possible reason why parents and institutional settings are invested in identifying more children with autism.

amother

Sun, Jan 26 2014, 12:15 pm

I just feel like everything needs a label or diagnosis these days. I could probably have all my kids diagnosed if I chose to. I feel so lost.

amother

Mauve

Tue, Jul 28 2015, 5:44 pm

Original poster here.

So after spending a lot of time and money I didn't have, the consensus is that the board of ed was extremely off the mark. My instincts were correct. Said child is in no way autistic. Said child does suffer from some anxiety and may be borderline ADD. There is no reason that with a little extra help, said child cannot thrive in a regular ed classroom.

amother

Teal

Tue, Jul 28 2015, 6:11 pm

OP, I am wondering how you ultimately gained clarity. Is there a professional you recommend for this? How do you know that the later diagnosis is more accurate than the previous one - by your own gut feeling?

I am in a similar position now, I definitely see where the diagnosis came from with the behaviors but feel that these behaviors may be stemming from some other source. For starters I'm accepting the diagnosis to get approved for services because there is a time window at stake (child would be aging out of certain services and can keep them with this diagnosis) and after we get over that hurdle I will have to decide whether to pursue a second opinion or to wait and see.

My child is anyway staying in a regular classroom for now, that's not the issue (the diagnosis does provide more support for that. but there's no reason to shunt them off to a special school if they can function in mainstream with support.) My concern is that the therapy provided for ASD is ABA which is very behaviorally based, and if my child's problems are coming from an emotional root then I worry that targeting them as behaviors may not only ignore the real problem but may somehow mess her up. This is not a professional, research-based worry, I don't know if there is any truth to it, but I feel like trying to modify someone's behaviors without addressing possible underlying emotional issues might suppress the emotional difficulty and leave them with worse emotional/personality problems down the line. That's my own home-grown theory and I reserve my motherly right to worry. But I do think the ABA might help with certain of the behavior issues, and I know a good ABA therapist addresses some deeper levels of social/emotional things as well, which I do think would be helpful to us even if it doesn't include everything I wanted to get at. I am advocating for an increase in counseling/play therapy as well so hopefully that will also help, and am strongly considering spending money I don't have out of pocket to cover some alternative type therapies because I do believe certain sensory/body systems are involved as well (particularly when it comes to anxiety and emotional regulation; I feel that something off in the body could cause a person to be more volatile behaviorally)

Would be interested in hearing how people have achieved clarity if they originally questioned the diagnosis. The person who for us is considered very good in this field, but I did feel that he had a slight autism bias - he seemed to be trying to determine whether or not it was autism rather than a more open ended "what could this be." But I do think he was fair and thorough, I just feel that as a mother something about this doesn't sit right. And it is definitely not denial - it would be far simpler to just accept and go with this, and in most ways I am, re. services. I just want to make sure we're not messing up somehow, and I don't know whom to ask.

amother

Mauve

Tue, Jul 28 2015, 7:00 pm

The therapists and those working directly with the child did not agree with the diagnosis. The diagnosis only qualified the child for academic support which was not needed. The diagnosis was made after a 30 minute parent session and 5 minutes with the child. The report did not paint an accurate picture of the child. There was a language barrier with the board of ed psychiatrist who gave the original diagnosis. I can keep going.....

amother

Teal

Tue, Jul 28 2015, 7:24 pm

Oh good grief!
I have actually never heard of autism being diagnosed on that kind of basis at all. By me, they recommended that I get my child's development evaluated (via pediatrician/health network, not DOE), all the DOE did was make educational/service recommendations, not diagnosis.

I also don't understand how or why an autism diagnosis only qualified you for academic support. Autism is not an academic disorder.

In any case, I still wonder how you eventually got it clarified.

Chana Miriam S

Tue, Jul 28 2015, 7:37 pm

amother wrote:

I am of the opinion that the diagnosis does not matter if you are treating symptoms which is really all autism spectrum management is. If he isn't talking, get speech help, I f he needs social skills get help with that. And so on. Every person on the spectrum is different and every person not on it as well. So meet his needs.

It's my experience that if you are seeing someone who knows asd they probably know how to diagnose as well.

And my kid with asd is making Aliyah at 19 this September. I wanted a second opinion and didn't get one because the label meant services. I figured the autism team would know if the doc screwed up. He didn't. And it really would not have mattered because we treated the kid not the disorder.

amother

Mauve

Tue, Jul 28 2015, 10:37 pm

amother wrote:

My pediatrician never agreed with the diagnosis. He did not believe there were enough warning signs (especially early on) to warrant the diagnosis. In our area the board of ed will only give services with a diagnosis, and only if it's having an impact on their academic performance. Academically my child is performing quite well. Socially and behaviorally not so much. For that, they are required to give us nothing.

seeker

Tue, Jul 28 2015, 10:44 pm

amother wrote:

Don't know what area you're in but in NY and as far as I understand pretty much anywhere in the US, if the behavioral problems are affecting the child's ability to participate in the educational program, the DOE needs to do something about it.

Aribenj

Wed, Jul 29 2015, 11:57 pm

Yes. We did an eval at age 4 and got a diagnosis of PDD-NOS (which at the time fell under the spectrum) and I completely disagreed... He had issues but no problem with affect.
We did another eval at age 6 which said he did not have PDD and then another at age 8 which confirmed it. He does have sensory and social issues as well as a short fuse. But not PDD-NOS
I am a strong believer in following your mommy instinct. If you feel something is not right, if something doesn't sit well with you, then look into it bc you're probably right.

amother

Teal

Thu, Jul 30 2015, 12:19 am

Aribenj, the problem is that it seems nowadays sensory + social issues + short fuse (emotional dysregulation?) = ASD.

I am now in a similar boat - I was pretty accepting of the ASD diagnosis, felt that even though I had my doubts it made enough sense to accept and the doctor who did the eval seemed thorough and fair. But I just spoke with the play therapist, true she just started working with my kid a couple of weeks ago, but she was SHOCKED to hear that the diagnosis was ASD. She said no way is this a kid with any type of autism. Which just left me scratching my head since I just came from a long meeting of hearing about how a special autism school would be such a better place... whatever.

Aribenj

Thu, Jul 30 2015, 8:14 am

amother wrote:

It would seem that way... For schools, especially Jewish ones who are ill equipped to deal with kids who are not typical cookie cutter type kids, it's just an excuse to send them away because they can't (or won't) deal with them...

Look, regardless of the label, the treatment is the same because of the symptoms. So if having autism as an official diagnosis will help insurance pay for the services your child needs anyways, so be it. You just have to make sure to find a therapist who understands that although the treatment is the same, the approach is not.

For example, if you need an ABA, just make sure she understands your child is CAPABLE of some things that an autistic child may not be, such as empathy and affect and to work with that.

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