New toddler ASD diagnosis, need info and support

[Anonymous]

My young toddler was just diagnosed with moderate ASD and recommended for speech, OT, and ABA. I’m feeling overwhelmed with the logistics of all this, figuring out who the best local therapists are, etc. and not having any luck finding good support. It seems like many other serious, life-altering medical issues for kids have really wonderful and easy-to-find resources for new families, but I’m not finding anything like what my friends who have kids with things like Down Syndrome or diabetes seem to have. When I google for autism resources in my area I get a lot of companies selling services but not really parent support. On social media I find poorly run FB groups full of pseudoscience and people saying ABA is awful. Is there some great resource that I just out there that I just haven’t found? We’re not in DC, but wanted the anonymous place to ask.

[Anonymous]

Pay attention to the voices raising concerns about ABA.

[Anonymous]

My son is now 6 but I was in a similar situation as you, OP. He has been diagnosed with ASD. My biggest concern (there are so many!) was language. I took him to his pediatrician and she wrote aprescription for speech therapy. She also recommended OT. Where we live, waitlists for ABA are very very long. However, my son has made progress with speech and OT. He is starting first grade on Monday. I recommend you speak to your pediatriciant and trust that you know what your child will benefit from unless otherwise recommended from a professional. Good luck and hugs! I know it's not easy.

[Anonymous]

Anonymous wrote:Pay attention to the voices raising concerns about ABA.

Or listen to your doctor?

Find a good ABA company for in-home services or daycare. I just was just marveling at how consistently gentle, kind, and patient our RBT therapist is today. Our ASD kiddo has made so much progress.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Pay attention to the voices raising concerns about ABA.

Or listen to your doctor?

Find a good ABA company for in-home services or daycare. I just was just marveling at how consistently gentle, kind, and patient our RBT therapist is today. Our ASD kiddo has made so much progress.

Or both?

Listening to adults who have lived experiences with what your child is experiencing is important.

Listening to medical providers is also important.

But parents need to understand both sides of this question, and both points of view to make decent decisions for their kids. To just cut off the voices of people like your child is wrong.

[Anonymous]

Yes, support for this really sucks.
- Work with your pediatrician and get whoever you can for speech and OT. Better something now than nothing.
- Ask the person that diagnosed if they have a list of speech / OTs. If they do then it’s a matter of calling all of them and seeing who has availability, who takes what insurance, and if they do push-in services or not (if that is what you need). I killed 2 weeks doing this so maybe take some time off from work.
- Explore / Google social skills classes.
- Beyond the above, there really isn’t anything else until kids hit 5 or 6. Find a developmental pediatrician.
- Find a therapist for yourself or potentially a couples counselor. The ride can be rough!
- If you both work, be prepared that it’s rough with all the transportation needed for these therapies.

[Anonymous]

Anonymous wrote:My young toddler was just diagnosed with moderate ASD and recommended for speech, OT, and ABA. I’m feeling overwhelmed with the logistics of all this, figuring out who the best local therapists are, etc. and not having any luck finding good support. It seems like many other serious, life-altering medical issues for kids have really wonderful and easy-to-find resources for new families, but I’m not finding anything like what my friends who have kids with things like Down Syndrome or diabetes seem to have. When I google for autism resources in my area I get a lot of companies selling services but not really parent support. On social media I find poorly run FB groups full of pseudoscience and people saying ABA is awful. Is there some great resource that I just out there that I just haven’t found? We’re not in DC, but wanted the anonymous place to ask.

OP, I hear you. I know that feeling at first, I felt the same way. Plus, I had moved to a new state shortly before the dx, so I really didn't know anyone.

I would reach out to your friends who have kids with SN and ask questions. Is there a local support group/facebook group for kids with sn (even if not specifically asd). Ask if they know of any good ABA/ST/OT places. Word of mouth is a great way to find providers. Are you involved in a church/place of worship? This can be a great place to meet other parents of kids with sn. I actually found my dc's providers through word of mouth with people I met at church.

As far as ABA, I have limited experience with it, because we got on a waitlist and waited some time, then finally started in late Feb. 2020...yes right then, so dc only got about 3 weeks of it before pandemic (it did reopen of course but my elderly mom helped tranport and before vaccines I did not want any possible exposure for her). Anyhow, dc loved it for the brief time they went. But I know other kids who have had really good experiences with it and have made much progress. I would not hesitate to try it, you can always stop it if you feel it's not best for your dc. I would get on the waitlists right away, it takes time.

ST and OT were great for my dc! I'd get those started asap. Does your dc get any services through Early INtervention (whatever it is called where you are?)

Logistics are tough. I had to accept that dc was just not able to do every single thing that could be helpful for her. I prioritized ST and OT (and ABA for the time we had it). We did Special Olympics Young Atheletes (great program, it's for kids under 8 with sn even if not intellectually disabled, which my dc is not), Tops soccer. Socializing stuff like that.

So defenitely I would try to find local support, like a local network (formal or informal) of others. It's been a wealth of info for me.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Pay attention to the voices raising concerns about ABA.

Or listen to your doctor?

Find a good ABA company for in-home services or daycare. I just was just marveling at how consistently gentle, kind, and patient our RBT therapist is today. Our ASD kiddo has made so much progress.

Or both?

Listening to adults who have lived experiences with what your child is experiencing is important.

Listening to medical providers is also important.

But parents need to understand both sides of this question, and both points of view to make decent decisions for their kids. To just cut off the voices of people like your child is wrong.

I listen to my child. I am there during every ABA session and I see that it is constructive, gentle (but firm) therapy that helps my son be able to move (slowly) towards goals that I know he wants: independence, ability to play with peers, ability to self-regulate. It’s a game changer. Actually, what I’ve seen with older children who have done ABA, is that they start using the techniques when calming littler children who are struggling. Just a wonderful therapy that, like vaccines, is vociferously attacked.

[Anonymous]

The discourse around ABA has been hijacked by 1) people who are now teens/early 20s+ and went through the therapy at least a decade ago if not more when it was a lot stricter, more regimented, and you committed to probably 25+ hours a week of it which is more than many kids get now and 2) people who have mild ASD and/or were diagnosed later in life beyond the early childhood years, who can’t see the need for ABA. People with level 1/mild ASD wouldn’t need ABA anyway.

If you have a level 2 or 3/moderate or severe kid it’s potentially a game changer. My DS was almost 3 when he was diagnosed. He had few words and a lot of echolalia and the use of a speech device was brought up. Now with a year of ABA under his belt, he’s newly 4 and, yes, still quite delayed but no one would suggest using a device or program now. He’s able to verbally communicate most of the time.

[Anonymous]

We have had a very good experience with ABA for my DC4, who was diagnosed at age 2 and started getting services immediately after. We both work full time and until recently my job was 100% in-person even throughout the pandemic. We couldn’t do speech and OT because the appointments were right in the middle of the workday. We decided to just do ABA which is done fully at the daycare.
OP, did your clinic put you in touch with a social worker? Ours did and they gave us a lot of resources for information and support.
If your county offers early intervention services then you could also get some help there.

[Anonymous]

ABA has been a mixed bag for our kid but overall positive. It depends a lot on your kids needs. Without ABA our son would not have been potty trained and without that there are so many opportunities that he has had that would be unavailable to him. Biggest issue with modern ABA is that the techs are not paid enough so the quality is quite variable. I would also avoid any place where the BCBAs do their training/supervision of the BTs/RBTs virtually. We have never done center based but have heard it can present opportunities to socialize with other autistic children.

I think it can be useful to talk to and viewpoints of adult autistics. However, you need to listen to people who are (1) diagnosed professionally (2) have similar profile as your child. If you look on spaces like Reddit there are many autistic people who feel that self-diagnosed autistics dominate autistic spaces. The subreddits I have found helpful are autism certified, spicy autism. A big issue with self diagnosis is most lay people are not qualified to differentially diagnose. And there are also people with other, more stigmatized diagnosis like BPD and NPD that find it more palpable to be autistic.

In terms of support groups if you can give a general description of your area maybe people can make suggestions?

[Anonymous]

I have an ASD kid, diagnosed in kindergarten.

I went the biomedical route, and my kid responded really well. My kid's an adult now, graduated from college and grad school at the top of the class, has a very good job. Socially, my kid has friends, but I would call my kid socially awkward. Way back in k, though, before I found the biomedical route, my kid's teachers told me my ASD child would never finish high school.

The first treatment I was told about was ABA, but after calling one provider in my area, I decided it's a scam. I was absolutely floored by all the pressure I got from this provider's office, who scheduled my kid for weekly sessions and called repeatedly, pressuring me to sign a contract for thousands and thousands of dollars for this supposed treatment for ASD.

I've posted about this many times on this board, but there's this "autism is permanent" mentality that pervades here. My kid's doctor says autism is a treatable condition, but that ASD kids will likely have issues forever, which is true in the case of my kid.

Here is a good summary of biomedical treatments: https://www.iidc.indiana.edu/irca/articles/an-introduction-to-possible-biomedical-causes.html

I changed my kid's diet (our entire family's diet), our house (my kid had terrible allergies), did tons of therapy: pt, ot, speech therapy. We did a bunch of alternative therapies that seemed to help incrementally. I was very careful to get only thimerisol-free vaccines. We chelated my child, which helped a lot, even though it scared the bejezus out of me. Cleaning up my kid's diet helped the most, as well as chelation. Digestive issues are a huge part of my kid's ASD.

It's very difficult to find a good biomedical treatment doctor, and most do not take insurance. They are often "functional medicine" doctors. Mine has retired, but he was fabulous. He literally saved my kid's life.

I'm not an earthy groovy person, and I was very skeptical of "alternative" treatments, but when I saw they worked, and that the ABA-type "therapies" held out no hope for my kid, I climbed on board the biomedical route to ASD. I'm glad I did.

I know a family in my church who followed the ABA route with their ASD kid, and that kid, who I think may be just as bright as my ASD kid, isn't going to college and can't live in his own. He screams at church, like he's in pain, which I'm sure he is. My kid was like that. But I knew my kid's condition wasn't permanent because my child at times would have mostly normal conversations. This other ASD child does too, which is heartbreaking for me to see. I tried to let the mom know about the biomedical approach, but her kid is 15, and she isn't willing to change course, which I find sad, mostly for her kid.

Good luck, OP. It's a long, hard road with an ASD diagnosis. I believe all the chemicals in our environment are what's caused this uptick in ASD kids, particularly Round-Up, which is in all our bodies. There's some research pointing in this direction, but Dow Chemical is powerful enough to squelch similar efforts.

Clean up your child's diet and environment as much as you can, and you'll start to see a difference in your child's behavior.

[Anonymous]

Anonymous wrote:I have an ASD kid, diagnosed in kindergarten.

I went the biomedical route, and my kid responded really well. My kid's an adult now, graduated from college and grad school at the top of the class, has a very good job. Socially, my kid has friends, but I would call my kid socially awkward. Way back in k, though, before I found the biomedical route, my kid's teachers told me my ASD child would never finish high school.

The first treatment I was told about was ABA, but after calling one provider in my area, I decided it's a scam. I was absolutely floored by all the pressure I got from this provider's office, who scheduled my kid for weekly sessions and called repeatedly, pressuring me to sign a contract for thousands and thousands of dollars for this supposed treatment for ASD.

I've posted about this many times on this board, but there's this "autism is permanent" mentality that pervades here. My kid's doctor says autism is a treatable condition, but that ASD kids will likely have issues forever, which is true in the case of my kid.

Here is a good summary of biomedical treatments: https://www.iidc.indiana.edu/irca/articles/an-introduction-to-possible-biomedical-causes.html

I changed my kid's diet (our entire family's diet), our house (my kid had terrible allergies), did tons of therapy: pt, ot, speech therapy. We did a bunch of alternative therapies that seemed to help incrementally. I was very careful to get only thimerisol-free vaccines. We chelated my child, which helped a lot, even though it scared the bejezus out of me. Cleaning up my kid's diet helped the most, as well as chelation. Digestive issues are a huge part of my kid's ASD.

It's very difficult to find a good biomedical treatment doctor, and most do not take insurance. They are often "functional medicine" doctors. Mine has retired, but he was fabulous. He literally saved my kid's life.

I'm not an earthy groovy person, and I was very skeptical of "alternative" treatments, but when I saw they worked, and that the ABA-type "therapies" held out no hope for my kid, I climbed on board the biomedical route to ASD. I'm glad I did.

I know a family in my church who followed the ABA route with their ASD kid, and that kid, who I think may be just as bright as my ASD kid, isn't going to college and can't live in his own. He screams at church, like he's in pain, which I'm sure he is. My kid was like that. But I knew my kid's condition wasn't permanent because my child at times would have mostly normal conversations. This other ASD child does too, which is heartbreaking for me to see. I tried to let the mom know about the biomedical approach, but her kid is 15, and she isn't willing to change course, which I find sad, mostly for her kid.

Good luck, OP. It's a long, hard road with an ASD diagnosis. I believe all the chemicals in our environment are what's caused this uptick in ASD kids, particularly Round-Up, which is in all our bodies. There's some research pointing in this direction, but Dow Chemical is powerful enough to squelch similar efforts.

Clean up your child's diet and environment as much as you can, and you'll start to see a difference in your child's behavior.

DP. Just going to push back on this a bunch. You can’t say x worked for my child and this other person’s child because there is tnt one established cause of autism and you don’t know any given person’s commorbidities . Some people do ABA and have the same results your kid had. Also if an autistic child also has substantial ID I don’t see how changing diet will result in them going off to college. I think it can be good to keep an open mind but there are definitely autistic children that have died for chelation because that is not something that is appropriate for every child. It’s also not an either or thing and I know a lot of families who have pursued biomedical interventions and ABA.

[Anonymous]

Anonymous wrote:I have an ASD kid, diagnosed in kindergarten.

I went the biomedical route, and my kid responded really well. My kid's an adult now, graduated from college and grad school at the top of the class, has a very good job. Socially, my kid has friends, but I would call my kid socially awkward. Way back in k, though, before I found the biomedical route, my kid's teachers told me my ASD child would never finish high school.

The first treatment I was told about was ABA, but after calling one provider in my area, I decided it's a scam. I was absolutely floored by all the pressure I got from this provider's office, who scheduled my kid for weekly sessions and called repeatedly, pressuring me to sign a contract for thousands and thousands of dollars for this supposed treatment for ASD.

I've posted about this many times on this board, but there's this "autism is permanent" mentality that pervades here. My kid's doctor says autism is a treatable condition, but that ASD kids will likely have issues forever, which is true in the case of my kid.

Here is a good summary of biomedical treatments: https://www.iidc.indiana.edu/irca/articles/an-introduction-to-possible-biomedical-causes.html

I changed my kid's diet (our entire family's diet), our house (my kid had terrible allergies), did tons of therapy: pt, ot, speech therapy. We did a bunch of alternative therapies that seemed to help incrementally. I was very careful to get only thimerisol-free vaccines. We chelated my child, which helped a lot, even though it scared the bejezus out of me. Cleaning up my kid's diet helped the most, as well as chelation. Digestive issues are a huge part of my kid's ASD.

It's very difficult to find a good biomedical treatment doctor, and most do not take insurance. They are often "functional medicine" doctors. Mine has retired, but he was fabulous. He literally saved my kid's life.

I'm not an earthy groovy person, and I was very skeptical of "alternative" treatments, but when I saw they worked, and that the ABA-type "therapies" held out no hope for my kid, I climbed on board the biomedical route to ASD. I'm glad I did.

I know a family in my church who followed the ABA route with their ASD kid, and that kid, who I think may be just as bright as my ASD kid, isn't going to college and can't live in his own. He screams at church, like he's in pain, which I'm sure he is. My kid was like that. But I knew my kid's condition wasn't permanent because my child at times would have mostly normal conversations. This other ASD child does too, which is heartbreaking for me to see. I tried to let the mom know about the biomedical approach, but her kid is 15, and she isn't willing to change course, which I find sad, mostly for her kid.

Good luck, OP. It's a long, hard road with an ASD diagnosis. I believe all the chemicals in our environment are what's caused this uptick in ASD kids, particularly Round-Up, which is in all our bodies. There's some research pointing in this direction, but Dow Chemical is powerful enough to squelch similar efforts.

Clean up your child's diet and environment as much as you can, and you'll start to see a difference in your child's behavior.

Take with a big tablespoon of salt.