Got an email about the Gars3 result...

[mamashark]

So the psychiatrist emailed me this morning. She said the Gars-3 results indicated that our daughter (who is 11 years old) "very likely has an autism diagnosis and that her autism is a level 2". 

And then she recommended that we go to a major children's hospital near us to get a "confirmation" of the diagnosis. We got the same recommendation for our son, too, and never bothered because the insurance accepted the diagnosis as it was and covered the various therapies we asked for. (and realistically, every therapist took our word for the diagnosis and didn't even ask for the psychological report).

I guess I'm not clear on what the benefit of having confirmation of the diagnosis is? 

I'm feeling less shocked by this diagnosis compared to my sons, but still having that (however momentary) feeling of ok now what??? 

 

 

[Storygirl]

Well, I'm sorry, but at the same time, I'm glad that you have better information now.

DS15's diagnosis was done by a psychologist, and we have no reason to go to someone else to confirm it. However, she provided a full report with a list of recommended therapies. If your psychiatrist is not willing to give you a more definitive report than "very likely has it," I think that is a little wishy washy for documentation. I would want a full report. I wonder if she is not comfortable making the actual official diagnosis. The "very likely" language I think is how the GARS scores things. When DS15 had the GARS years ago, his result was "not likely' (that was wrong).

Can you follow up with a question about whether she will provide a full diagnostic report to you, or whether she is indicating that you need to go to someone else for that?

[kbutton]

I am glad you are taking things well, but I am sorry that you are facing this.

Our diagnosis from our psychologist has always been accepted, but we haven't used insurance for therapies. We have HSA coverage, and they tend to cover a wider variety of things, just not until the deductible is met. But then, they don't argue about a lot. Our psychologist gives a full report with diagnoses and school recommendations, etc., so it's a good, actionable report.

I think it's possible that an autism specialist might have more tools or connections to therapy to offer, but that probably varies by hosptial.

Our closest children's hospital here has a reputation for missing autism in kids like my (and possibly lots of people with level 1), so I would ask around first. 

[mamashark]

I emailed her back to see if she will give me a report. I didn't honestly expect her to email me results, we have a followup appointment with her in a couple weeks, I expected the info then.

She said at the last appointment that she used to diagnosis asd all the time in Texas, but that some insurances where we are now don't like her to diagnose... but I already checked with our insurance and they said they would accept the diagnosis from her.

[Lawyer&Mom]

As an Autistic adult, I firmly believe an Autism diagnosis is good news.  So, Congratulations!  I hope this diagnosis is a tool that open doors and provides insights to help you develop her strengths, support her weaknesses and ultimately deepen your relationship with your child.

I agree with the comment above, I would wait to see what treatment plans she suggests before seeking a confirmation.  If she can give you good ideas and connections, you may already have what you need. 

[Lecka]

If your insurance takes it, I think that seems fine! My insurance is one that has the extra requirements, so — I would have to do the extra step.  But to me — it seems nice you don’t.

For me — I did a re-eval about 18 months ago, and it was because of insurance, and the pediatrician getting wiggy about it.  It did not actually do much other than that.  But I needed to do it for those reasons.  It was very check-the-box for me, and the psychologist was kind-of “why are you here, you seem like you have the information you need.”  

I am a bit cynical about it, but actually I had a nice outing with my husband and son, and we went out to eat afterward. 

[Lecka]

I will add — for me, the pediatrician has to sign a referral every so often for my son’s therapy, and he was starting to be like — I can’t keep writing this referral without updated testing that is a certain way.  We had various things he didn’t feel like he could look at, compared to the updated testing he thought we should have.  

And then too — at a certain point a thing gets submitted to insurance and the insurance also would want to see it.  

 

[mamashark]

1 hour ago, Lawyer&Mom said:

As an Autistic adult, I firmly believe an Autism diagnosis is good news.  So, Congratulations!  I hope this diagnosis is a tool that open doors and provides insights to help you develop her strengths, support her weaknesses and ultimately deepen your relationship with your child.

I agree with the comment above, I would wait to see what treatment plans she suggests before seeking a confirmation.  If she can give you good ideas and connections, you may already have what you need. 

 

Honestly, I have to agree that it is good news. It explains some things and helps me know better how to focus on her weaknesses and how to capitalize on her strengths. It's a bit of a brain game to switch from treatment for my 6 year old son and my 11 year old daughter, who have essentially the same diagnosis/severity level, but present so differently. 

Can you explain something to me though? The "early symptoms" of autism are SOOOOOO well advertised (toe walking, hand flapping, lack of eye contact, spinning the wheels on cars rather than playing with them, etc.) that I get a lot of confusion from family, and even some medical professionals who think, well gee, if it was missed as a toddler then it's not really autism. I can personally think back and see signs that I missed - the rigidity that prevented us from being able to walk around the block the "wrong way", the need to know the day's schedule every day, the hyperlexia, the terrible time potty training, the sleep issues, the lack of a "cuddly" baby who no one questioned because she just would rather be moving ALL. THE. TIME. BUT - she didn't LOOK autistic as a 2 year old. NOW, autism explains her social deficits, her rocking when upset, flapping when excited, severe sensory issues that had her diagnosed as ADHD at one point, etc.  So how do you answer those questions? When it didn't look autistic and probably wouldn't have been diagnosed at age 2 (and at age 6 was diagnosed as ADHD instead) but is being recognized now and people want to point to a "change" or "cause" that would have changed things, when really she just "grew into it", or as she matured, her delays became more apparent from my perspective?

[Lecka]

It’s not your job to explain that.  

What you are saying is so common.

If your family members want to find out more, they can, and the same with medical professionals, but to a great extent it’s not your job to educate them.

But it’s different if they are skeptical or if they really want to know more.  Not the same thing.

If they are just skeptical — this happens with an autism diagnosis at any age and any functioning level.

I had my MIL be like this, with a 3-year-old diagnosed in the severe range (at the time, he is mild-to-moderate now).  

Over time she switched from being skeptical to wanting to know more, to some extent.  

She said, and I quote, he couldn’t be autistic because he gave her a hug and wasn’t in a corner rocking back and forth.  

[Lecka]

More helpfully — in a short way, you could say the autism diagnosis has changed and it is autism spectrum now, so it is probably different than what they are used to if they haven’t been really keeping track.  You could say there are a lot of mis-conceptions about diagnosis, but you are confident with your daughter’s diagnosis.

I’m sorry, you’re having to deal with this, but it’s definitely not just you.  A lot of people are in denial for a while.

 

[mamashark]

ok, thanks, so I need to keep focused on the fact that the diagnosis helps ME and it helps my daughter. whether others understand or care to understand is irrelevant. I'm honestly even wondering if I need to share this diagnosis with many people, including grandparents. It'll depend on the situation.

I had to laugh, because part of the email was a note that she would need substantial support in the public school setting, and I was like, uh huh, why do you think I'm homeschooling her? She wouldn't last a week in the public school and I knew that from when she was in Kindergarten! Now I just have data to back my opinions up!

[Lecka]

If someone actually wants more resources, you might be able to recommend a book at some point, if you find one that is a good fit for your daughter.  

They might or might not be aware, that Aspergers Disorder is considered part of Autism Spectrum now, since DSM 5.  Or they might not know very much about autism.  

[Lawyer&Mom]

This is such a fascinating question.  I think the well-advertised red flags are popular because they are clear-cut and easy to spot, not because they are universal.  And like you said, the symptoms may have been there from day one, but they were more subtle.  The stereotype is the introverted boy, sitting alone, spinning tops in the corner. What if you have a loud girl, always in motion, socially active, if not socially adept?  Who talks constantly about princesses and has memorized entire chapters of the Blue Fairy Book verbatim?  My kid passed the toddler pediatrician Autism screening without even a single red flag.  Girls get diagnosed later than boys. But I also think outliers diagnosed later than the more stereotypical presentation, boys or girls.   

[Lecka]

Also not everybody, at all, does certain things (I am thinking of toe walking and hand flapping) that some people think “oh, you have to do that.”    This is really not a good way to diagnose.

If you wanted to — there are videos somewhere (I’ll find it) that show what autism in toddlers actually looks like, or what they’ll actually be looking for.

But even those — I don’t think the videos I will link are necessarily covering 100% of people.  

[Lecka]

https://autismnavigator.com/

So this has videos with toddlers.... it really depends what red flags specifically people mean, but my son (whose about the same age) would not flag the M-CHAT (if that is something you have heard of — since your daughter is 11.... my son is 10 turning 11 soon).  

Now red flags are more about joint attention, which is not very similar (to me) to the M-CHAT stuff.  

[Lecka]

There’s been this big “autism baby sibs” study and they have gotten somewhat better about knowing what early signs of autism are, but — it is just something where I think there have been some changes in the past 5 years and the past 10 years.  

[PeterPan]

6 hours ago, mamashark said:

autism is a level 2". 

The reason you need full evals this time is because ASD2 needs services and probably means she also qualifies for county and state level disability funding, transition services, possibly social security/medicare waivers, all kinds of things. 

My ds was high 1, pushing into 2, people would go back and forth, but at this point everyone agrees 2. It's a big deal. 1 is just really different.

[Storygirl]

1 hour ago, mamashark said:

ok, thanks, so I need to keep focused on the fact that the diagnosis helps ME and it helps my daughter. whether others understand or care to understand is irrelevant. I'm honestly even wondering if I need to share this diagnosis with many people, including grandparents. It'll depend on the situation.

 

I didn't share DS15's diagnosis with any family other than his siblings. Not even the one grandmother who let me know that she suspected Asperger's. Our extended family does know that he has ADHD and an IEP, etc. But he didn't want everyone to know, and there is no reason for them to know right now. We wanted to honor his feelings about it. We do, however, share the information freely with staff at school, because knowing the diagnosis there does makes a difference.

We do expect that he will not launch into adulthood at the usual time and will take more time to be ready, so there may be a time when more difficulties become obvious, when we think there is a reason to explain that he has ASD.

[mamashark]

1 hour ago, PeterPan said:

The reason you need full evals this time is because ASD2 needs services and probably means she also qualifies for county and state level disability funding, transition services, possibly social security/medicare waivers, all kinds of things. 

My ds was high 1, pushing into 2, people would go back and forth, but at this point everyone agrees 2. It's a big deal. 1 is just really different.

Yes, but my son is probably a level 2 also, and the psych report with the diagnosis (and no level listed) was enough (didn't need the full ados eval) for the insurance to cover all the speech, ot, and play therapy I asked for, including a few visits with a pediatric nutritionist. We also got medical assistance off of it... so the only thing I'd need a second opinion for is if this lady won't give me an actual report with diagnosis on it, which is what I'll need for medical assistance.

Honestly, I have a lot more reading to do, but a social group might be the only service I look into at this point, we already have a lot of the other stuff covered (interoception, social thinking, academic modifications, sensory stuff) because I saw the deficits and started intervening before the diagnosis. 

 

[PeterPan]

I agree with you that access to services is the big goal. Is this the same person diagnosing both kids or different? Was one a pdoc and one a psych? Is this pdoc or whatever expecting more to show up? 

[PeterPan]

2 hours ago, Storygirl said:

when we think there is a reason to explain

I really appreciate how you're handling this with your ds. I think as kids approach adulthood, which yours is legally at least, it's so important to respect that it's THEIR diagnosis, their term to use or not use. It's absolutely nobody's business, and it's his choice to use it or not use it. It doesn't even MATTER, kwim? Like in a way it really doesn't. They've known him all his life and they're already used to him and already have strategies. Wouldn't change anything.

[PeterPan]

1 hour ago, mamashark said:

we already have a lot of the other stuff covered (interoception, social thinking, academic modifications, sensory stuff) because I saw the deficits and started intervening before the diagnosis. 

Did you say you're already running crazy with appts? I can't remember, sorry. I will say that one reason I like having my ds with a variety of people is it pushes him to generalize and use the skills in more situations. It shows us his holes. Sometimes it's waiting, self-advocacy, other kinds of skills, kwim? So you want to think through generalization when you're doing all this intervention yourself.

[mamashark]

Just now, PeterPan said:

I agree with you that access to services is the big goal. Is this the same person diagnosing both kids or different? Was one a pdoc and one a psych? Is this pdoc or whatever expecting more to show up? 

The first was a psychologist - she screwed up the behavior assessment for my son and tried to get us to come for counseling for anxiety without reading all the paperwork she required us to fill out - we canceled our appointments when it became apparent that she wasn't willing to actually do as we asked and assess our son, and asked her to mail a report... 6 months later got the paperwork in the mail with asd diagnosis, lots of recommendations, but no level listed. I refused to go back to her, the whole thing was unprofessional and terribly handled.

The second (current) is a psychiatric nurse practitioner. She is looking to treat ocd/anxiety (why we went to her) and wants to do that in order to rule out ADHD, since she said she technically qualifies for an ADHD diagnosis too. But after being in her office literally 15 minutes, I could tell her questions shifted suddenly to start addressing possible ASD. I was shocked at how quickly she picked up on that after numerous other professionals missed it.

[mamashark]

2 minutes ago, PeterPan said:

Did you say you're already running crazy with appts? I can't remember, sorry. I will say that one reason I like having my ds with a variety of people is it pushes him to generalize and use the skills in more situations. It shows us his holes. Sometimes it's waiting, self-advocacy, other kinds of skills, kwim? So you want to think through generalization when you're doing all this intervention yourself.

yes, I have her in several things that she can use to generalize - she has 3-4 activities for herself each week depending on the week, where she has to work for another adult, and be around other kids of various ages, and with 4 kids total, I've got my schedule carefully handled so that everyone can maintain emotional regulation... including mom!! 🙂 

[PeterPan]

1 minute ago, mamashark said:

The second (current) is a psychiatric nurse practitioner. ...I was shocked at how quickly she picked up on that after numerous other professionals missed it.

Ok, so psychiatric nurse practitioners are awesome. Hey, why don't I take ds to one?? LOL I mean, seriously, I know someone who uses a pnp elsewhere and the experience was SUPER. 

So... I don't know insurance. You had a less than stellar psych experience. Around here hospital psychs are dreadfully expensive unless you have serious insurance. I have a high deductible, so that has never been my reality. Anyways, I think what they're saying is an MD (or presumably PNP) diagnosis works for the medical. I don't know what it will get you, and it's not giving you the rest of the psych information.

So I don't think she was screwing you with bad advice or something. Your evals would be more complete and you might catch something. But I hear you on rolling with what is practical.

[ElizabethB]

On 9/13/2019 at 11:31 AM, mamashark said:

 

Honestly, I have to agree that it is good news. It explains some things and helps me know better how to focus on her weaknesses and how to capitalize on her strengths. It's a bit of a brain game to switch from treatment for my 6 year old son and my 11 year old daughter, who have essentially the same diagnosis/severity level, but present so differently. 

Can you explain something to me though? The "early symptoms" of autism are SOOOOOO well advertised (toe walking, hand flapping, lack of eye contact, spinning the wheels on cars rather than playing with them, etc.) that I get a lot of confusion from family, and even some medical professionals who think, well gee, if it was missed as a toddler then it's not really autism. I can personally think back and see signs that I missed - the rigidity that prevented us from being able to walk around the block the "wrong way", the need to know the day's schedule every day, the hyperlexia, the terrible time potty training, the sleep issues, the lack of a "cuddly" baby who no one questioned because she just would rather be moving ALL. THE. TIME. BUT - she didn't LOOK autistic as a 2 year old. NOW, autism explains her social deficits, her rocking when upset, flapping when excited, severe sensory issues that had her diagnosed as ADHD at one point, etc.  So how do you answer those questions? When it didn't look autistic and probably wouldn't have been diagnosed at age 2 (and at age 6 was diagnosed as ADHD instead) but is being recognized now and people want to point to a "change" or "cause" that would have changed things, when really she just "grew into it", or as she matured, her delays became more apparent from my perspective?

You don't have to explain, but if you want to, you can say that autism presents differently in girls.