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Anonymous wrote:Show of hands as we are talking about the biology behind autism- how many here have sought out a FRAT test for their autistic family members?

I am totally opposed to genetic testing that doesn’t have any benefit. so no, of course not.

NP. My kids have been diagnosed with a genetic syndrome that is associated with autism and they also have been diagnosed with autism. Treating the genetic syndrome with prescription supplements and medication has really improved their autism. There are no targeted gene therapies yet but they are working on it and it will happen soon, in the next couple years or decades. Then other children like mine may be cured.

Ok - but that is likely a completely different scenario than most people here, and possibly better conceptualized as a different diagnosis. Writ large there is absolutely zero reason to believe that there will be gene therapies for autism in the next couple of decades let alone years.

Yeah, so let's just not research genetic links to autism. Must be a waste of time and also if we don't research them you'll be proven correct!

It is a waste of time and money.

DP. I don’t think it’s a waste but it’s crazy how this seems to be the only avenue researchers are/are able to pursue.

What do you think they should pursue?

The ABA industry is valued at billions of dollars paid for from insurance premiums and tax dollars every year, much from companies that coerce families into signing their kid up for 40 hours of treatment weekly delivered by people without college degrees who haven't even completed their RBT certification. The cost of this research is nothing when put into perspective and I think understanding the biology behind autism is pretty important.

They could research the effectiveness of ABA for one thing! or the impact of insurance coverage on ABA companies.

It’s pretty well known that the search for genetic roots of mental health/developmental conditions has been a red herring.

The effectiveness of ABA has been thoroughly researched since at least the 1950s. Insurance coverage started in SC, go look it up yourself, tons of work involved fighting for this- only reason insurance companies granted coverage was BECAUSE of that research.

I will agree with you that insurance coverage has saturated the industry with inexperienced RBTs and pointless requirements. I don’t even take insurance because their asks were going against best practices for my clients.

So find someone that doesn’t take insurance if that’s your complaint, but the field of ABA and supporting research is sound. Stick to BCBA/LBA only providers and background check thoroughly their experience, education, and overall fit with your child’s needs. You can find the best provider but it might just not be a good fit- a good provider will tell you this, just keep looking. Be confident in your choice BEFORE they start working with your child.

Anonymous wrote:I agree there are well known comorbidities that come with autism. Some symptoms may even be cured with treatment when the underlying cause is evaluated. Its surprising there isnt a gold standard in evaluating the health of autistic children. I would love to see that as a research goal.

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Anonymous wrote:Show of hands as we are talking about the biology behind autism- how many here have sought out a FRAT test for their autistic family members?

I am totally opposed to genetic testing that doesn’t have any benefit. so no, of course not.

NP. My kids have been diagnosed with a genetic syndrome that is associated with autism and they also have been diagnosed with autism. Treating the genetic syndrome with prescription supplements and medication has really improved their autism. There are no targeted gene therapies yet but they are working on it and it will happen soon, in the next couple years or decades. Then other children like mine may be cured.

Ok - but that is likely a completely different scenario than most people here, and possibly better conceptualized as a different diagnosis. Writ large there is absolutely zero reason to believe that there will be gene therapies for autism in the next couple of decades let alone years.

Yeah, so let's just not research genetic links to autism. Must be a waste of time and also if we don't research them you'll be proven correct!

It is a waste of time and money.

DP. I don’t think it’s a waste but it’s crazy how this seems to be the only avenue researchers are/are able to pursue.

What do you think they should pursue?

The ABA industry is valued at billions of dollars paid for from insurance premiums and tax dollars every year, much from companies that coerce families into signing their kid up for 40 hours of treatment weekly delivered by people without college degrees who haven't even completed their RBT certification. The cost of this research is nothing when put into perspective and I think understanding the biology behind autism is pretty important.

They could research the effectiveness of ABA for one thing! or the impact of insurance coverage on ABA companies.

It’s pretty well known that the search for genetic roots of mental health/developmental conditions has been a red herring.

The effectiveness of ABA has been thoroughly researched since at least the 1950s. Insurance coverage started in SC, go look it up yourself, tons of work involved fighting for this- only reason insurance companies granted coverage was BECAUSE of that research.

I will agree with you that insurance coverage has saturated the industry with inexperienced RBTs and pointless requirements. I don’t even take insurance because their asks were going against best practices for my clients.

So find someone that doesn’t take insurance if that’s your complaint, but the field of ABA and supporting research is sound. Stick to BCBA/LBA only providers and background check thoroughly their experience, education, and overall fit with your child’s needs. You can find the best provider but it might just not be a good fit- a good provider will tell you this, just keep looking. Be confident in your choice BEFORE they start working with your child.

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Anonymous wrote:I am thrilled at this development, as a parent of a child with "mild" autism, because it offers a path for both better understanding the specific challenges my kid faces, and also possibly to make it easier to identify the appropriate supports and therapies.

Here are the categories (my summary from the Princeton Engineering article):

Social and Behavioral Challenges. Show core autism traits (including social challenges and repetitive behaviors), but meet developmental milestones on time. Often co-occurring with ADHD, anxiety, OCD, and other disorders.

Mixed ASD with Developmental Delay. Mixed presentation of autism traits (may have repetitive behaviors but not social challenges, or vice versa). Tends to reach developmental milestones like walking and talking later than is typical.

Moderate Challenges. Show core autism behaviors but but less strongly than other groups. Meet developmental milestones all time. Does not tend to co-occur with other conditions such as ADHD and anxiety.

Broadly Affected. More extreme and wide-ranging presentation of autism behaviors. Includes not only social issues and repetitive behaviors, but also communication issues, and is very likely to co-occur with other psychiatric disorders, including mood disorders.

The last group, what people would think of as classic autism prior to the recent expansion of the category to include a broader range of behaviors, was the smallest group in the kids they studied (just 10% of participants got this classification).

My kid would probably be categorized in the first group. One thing I really like about the categories is that it's not a strict continuum from "mild" to "severe". Rather, they are looking at three metrics (severity of autism behaviors, developmental impacts, and co-occurring diagnoses) to group kids by the types of challenges they may face. This is much more useful than trying to explain my kid has "mild to moderate" autism which doesn't really capture what is going on.

I could also see this being useful in the conversation about when it is appropriate or beneficial to mainstream kids and when they may be better off in a specialized classroom.

This is interesting. My DC has straddled many of the diagnoses as they keep twiddling with them. First he had pragmatic- semantic disorder - with other issues. Then PDD-nos but not Asperger’s. Now it’s Level 1. None were a great fit. However with this description, he looks like he is more in the second group than the first as he sat up late, crawled late, walked at 16 months and was a person of few words (very well articulated however) for a long time. He wasn’t considered “development delay”, but he was edging towards it. As an adult he still has some hypotonia and coordination issues. He was in a social skills class from 3rd grade to HS graduation and credits it with his success in college. We are all math and science geeks in our family and everyone has a smattering of autistic traits, but he ended up with a few more. He did well in college and has a good job now. He is intelligent and is the stereotypical computer engineer so I think his autistic traits are known entities at his workplace. He is within that norm. He moved out a few years ago. He still needs some prodding and I think he should get a cleaning lady, but otherwise he is almost independent now as he heads toward his 30th birthday. Delayed, but getting there.

He still is very rigid on some things and when he hits his limit on socialization, he is done.

Since he was well behaved in school and did well academically, he never had an IEP or 504. However, we did have him move to a different ES in the middle because the grade social interactions were terrible.

DEAWatkins wrote:Side conversation here but does anyone have a developmental pediatrician they'd recommend?

Anonymous wrote:My provider told our family “i will RX you with ASD level 3 or else they will constantly try and downgrade and eliminate your services”. This was in 2017. I do think this backfired because now the system is overburdened with heavy needs ieps and diagnostics however its the only way the medical system could get around making sure these kids got what they needed. It takes so much time, resources and connections to even get a diagnosis that when you get one you want a “heavy one” as a ticket to the resources you have been desperately waiting for.

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Anonymous wrote:Fifth type in my opinion. PDA along with Level 1 ASD, ADHD, and anxiety.

This is my kid. It’s such a hard type to parent. I’m at a loss regarding what to do. Any thoughts?

I wish it were recognized because it's so hard to get providers to understand our children. When someone tells me their child is PDA, I just get it. They don't have to tell me Level 1 ASD, ADHD, anxiety, OCD, gifted, NT passing but needs lots of support, etc. It would be so much easier to communicate with providers, schools, and other parents if it had the recognition it deserves. We're still walking the tight rope of lower demands, offering choices, using declarative language but also imposing logical consequences for behavior that is truly destructive or hurtful. I can appreciate the perspective of PDA podcasters, but I am really frustrated by the lack of guidance about how to impose consequences that are fair, consistent, and don't trigger the PDA response. You can't just not discipline your child. I'm very interested to see the outcome of this low-demand parenting as most of these podcasters have minor children.

One of my asd kids is pda. I gave him zero consequences except when his actions effected his sibling. Hes doing great- in college, in a stable relationship.

How did that work? like he didn’t take out the trash and you just said ok and did it yourself? He swore or hit you and you let it go? He watched TV instead of homework?

Pretty much, without the hysterical gibberish you threw in there.

If he didn't take out the trash when I asked him to I just did it later. I greatly valued peace and low stress over "winning!!"
As I said, he's a college student in a stable relationship. Hes working towards an advanced degree. I expect he won't be taking fhe trash out when he gets married ans I expect his partner who also seems to have pda won't either. Luckily removing the petty demands allowed him to thrive and focus on what he was interested in ans I expect he'll be hiring someone else to take his thrash out. Maybe it will be one of the maladjusted kids who's parents insisted on dominating their children.

As for hitting- if thats what goes on in your home i suggest you seek help for your child pronto. Parent training or antipsychotics