New autism diagnosis

[Anonymous]

Anonymous wrote:Hi Mom…welcome to the world of asd parenting. We are a small group but we all understand what you are going through. My first recommendation is to get the ados test. Symptoms you describe are stereotypical autism traits, but sometimes those are caused by anxiety or severe adhd. Get on the list at children's or KKI for a real battery of tests. a lot of us have been in your shoes. You have such anxiety over what his future (and yours)will look like. You want a crystal ball to give you an idea of what to expect. As a mom with an asd level I son who is now approaching teens…Ive been there and STILL wish for that crystal ball. I remember reading this board every day hoping to see some sign of my son in someone elses child's description to find out what his future would look like. what is difficult, is that every child is different. Some kiddos are super easy when they are younger and you hardly see any differences. But as they get older and school and social demands increase, they struggle more. Some don’t. He may be a kid who has no behaviors throughout his childhood, but as soon as puberty hits, he is like a totally different child. I know where you are and understand you don't want to share his diagnosis bc you don’t want to out him in case his autism is extremely mild and people wont notice. If you do further testing and get confirmation, I recommend you be as open as possible with everyone. The reality is as mild as his asd might be, he will still have differences that are noticeable. Being able to have a name to explain those differences makes it SO much easier to navigate friendships and school. Most educated people understands autism these days. some more than others. Personally, I prefer people to understand that my sons differences or the odd things he may say are because of his autism, not because he is a bad behaved child or I have done a bad job parenting. And FYI…even if you don’t tell them, people see the differences and they know. Frankly it is more awkward NOT talking about it with people when there are situations his differences are obvious. You will be amazed at the support you will get and also will learn very quickly who your true friends are. I will be totally honest with you, it is not easy. You will be your sons biggest advocate and cheerleader. Best thing you can do is give him as much early intervention and therapies as possible. Especially early on it makes a huge difference and later on i life if you hit a rough patch, you wont blame yourself and winder if you has done more maybe he would not be struggling like this. This life has its hard moments. but man it has rewards that most parents will never have the opportunity to experience.

Thank you, PP. Wise words. We haven’t told anyone yet. We are letting the news sink in I guess. I have a couple of questions for you and for everyone who may have experience with this. What is your opinion on public school handling these diagnosis. Is IEP good enough? We were planning to enroll him in a mainstream private (his older sibling goes there). Will private school be enough if his case is mild? Are we required to disclose this information?

[Anonymous]

OP here. Another question: I’ve seen contradictory opinions on ABA therapy. Why is this?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hi Mom…welcome to the world of asd parenting. We are a small group but we all understand what you are going through. My first recommendation is to get the ados test. Symptoms you describe are stereotypical autism traits, but sometimes those are caused by anxiety or severe adhd. Get on the list at children's or KKI for a real battery of tests. a lot of us have been in your shoes. You have such anxiety over what his future (and yours)will look like. You want a crystal ball to give you an idea of what to expect. As a mom with an asd level I son who is now approaching teens…Ive been there and STILL wish for that crystal ball. I remember reading this board every day hoping to see some sign of my son in someone elses child's description to find out what his future would look like. what is difficult, is that every child is different. Some kiddos are super easy when they are younger and you hardly see any differences. But as they get older and school and social demands increase, they struggle more. Some don’t. He may be a kid who has no behaviors throughout his childhood, but as soon as puberty hits, he is like a totally different child. I know where you are and understand you don't want to share his diagnosis bc you don’t want to out him in case his autism is extremely mild and people wont notice. If you do further testing and get confirmation, I recommend you be as open as possible with everyone. The reality is as mild as his asd might be, he will still have differences that are noticeable. Being able to have a name to explain those differences makes it SO much easier to navigate friendships and school. Most educated people understands autism these days. some more than others. Personally, I prefer people to understand that my sons differences or the odd things he may say are because of his autism, not because he is a bad behaved child or I have done a bad job parenting. And FYI…even if you don’t tell them, people see the differences and they know. Frankly it is more awkward NOT talking about it with people when there are situations his differences are obvious. You will be amazed at the support you will get and also will learn very quickly who your true friends are. I will be totally honest with you, it is not easy. You will be your sons biggest advocate and cheerleader. Best thing you can do is give him as much early intervention and therapies as possible. Especially early on it makes a huge difference and later on i life if you hit a rough patch, you wont blame yourself and winder if you has done more maybe he would not be struggling like this. This life has its hard moments. but man it has rewards that most parents will never have the opportunity to experience.

Thank you, PP. Wise words. We haven’t told anyone yet. We are letting the news sink in I guess. I have a couple of questions for you and for everyone who may have experience with this. What is your opinion on public school handling these diagnosis. Is IEP good enough? We were planning to enroll him in a mainstream private (his older sibling goes there). Will private school be enough if his case is mild? Are we required to disclose this information?

NP here — there’s a lot of wisdom in that prior post. I would say, take some time to digest the information. Do some reading — Barry Prizant’s Uniquely Human may be a good start. Public with an IEP or mainstream private — both may be good options but it really depends on the specific school. Some privates are able to provide good supports, and even provide a positive environment that celebrates neurodiversity. Others do not. In my journey, I have found that transparency and partnership with the school makes a huge difference. If you get a clear diagnosis — via the ADOS, as others have pointed out — i would share it with the school. It is generally pretty well understood and will help educators understand your child better.

[Anonymous]

My son is now 16 but was diagnosed asd at age 3. It’s a lot to digest but it will be ok. ❤️ Early intervention services are available & can really help with communication, transitions, sensory, etc. We have used ABA, speech, OT, social skills groups over the years. My son has an IEP with minimal but important supports and has been successful in the typical classes. Social situations and unstructured times can be tricky but he is finding his way. Try just to focus on the right now. He’s still the same kiddo he was before diagnosis.

[Anonymous]

I am sorry I haven't read many responses. Mine is a teen now.

Advice:
1.) Do as much early intervention as you can handle and he can handle. It's supposed to be fun a that age. Mine enjoyed the attention. I wish I had done more.

2.) Take care of you and do not overextend
While I wish I had done more, I also am glad I kept myself sane. Although we had family in the area, they were not a support system and really could not accept the diagnosis. So we did the best we could with the circumstances.

3.) Keep connecting with other families in the same boat through online and inperson support groups or you may meet some through an early intervention preschool. It's great for learning about resources, sharing inside jokes only a parent in this situation could find funny, etc.

4.) Sometimes improvement is baby steps or snail movements and other times there are bursts. Focus on progress and take time to look back and see how far he has come.

5.) Playdates help with both SN peers and neurotypical kids. I felt anxious asking NT families and rejection is hard, but I saw language leaps with every playdate where the kid was more advanced than mine. With other kids with SN I saw the joy of connecting and sometimes finding someone with the same interests or quirks.

I could write soooo much more.

[Anonymous]

Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

[Anonymous]

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

I was looking last year and found it really difficult to find services in Spanish. If you're in DC, VOZ speech therapy has been recommended to me but I didn't end up using it. All of my child's services are in English, his default language is Spanish and there are some teachers and therapists who can understand some Spanish, which helps a lot. It's just a coincidence, we didn't know when we signed up.

Unless you're planning to leave the country, it will be important for your child to pick up English as well (I am fully aware of benefits of being bilingual, and we're a trilingual household, but still as an SN mom think it's important to give enough opportunities for English learning).

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

I was looking last year and found it really difficult to find services in Spanish. If you're in DC, VOZ speech therapy has been recommended to me but I didn't end up using it. All of my child's services are in English, his default language is Spanish and there are some teachers and therapists who can understand some Spanish, which helps a lot. It's just a coincidence, we didn't know when we signed up.

Unless you're planning to leave the country, it will be important for your child to pick up English as well (I am fully aware of benefits of being bilingual, and we're a trilingual household, but still as an SN mom think it's important to give enough opportunities for English learning).

Thank you. OP here. We used Voz speech therapy. Ana Maria is great. I'm trying to find other options since logistically would be better if we can find a practice closer to home. Yes, we're planning to expose our son to English eventually. I'm afraid that doing it too soon may delay even more his speech development. It's a tough choice.

[Anonymous]

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

All my kid’s RBTs and our current BCBA are native Spanish speakers, though instruction is in English. You should be able to find an ABA company that has bilingual therapists.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

All my kid’s RBTs and our current BCBA are native Spanish speakers, though instruction is in English. You should be able to find an ABA company that has bilingual therapists.

What company are you using?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

I was looking last year and found it really difficult to find services in Spanish. If you're in DC, VOZ speech therapy has been recommended to me but I didn't end up using it. All of my child's services are in English, his default language is Spanish and there are some teachers and therapists who can understand some Spanish, which helps a lot. It's just a coincidence, we didn't know when we signed up.

Unless you're planning to leave the country, it will be important for your child to pick up English as well (I am fully aware of benefits of being bilingual, and we're a trilingual household, but still as an SN mom think it's important to give enough opportunities for English learning).

Thank you. OP here. We used Voz speech therapy. Ana Maria is great. I'm trying to find other options since logistically would be better if we can find a practice closer to home. Yes, we're planning to expose our son to English eventually. I'm afraid that doing it too soon may delay even more his speech development. It's a tough choice.

Actually, exposure to two languages doesn't slow down language acquisition, there are many studies that confirm it. The benefit of more than one language is the creation of new neural pathways and neuroplasticity that comes with it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

All my kid’s RBTs and our current BCBA are native Spanish speakers, though instruction is in English. You should be able to find an ABA company that has bilingual therapists.

What company are you using?

Brighter Strides.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

I was looking last year and found it really difficult to find services in Spanish. If you're in DC, VOZ speech therapy has been recommended to me but I didn't end up using it. All of my child's services are in English, his default language is Spanish and there are some teachers and therapists who can understand some Spanish, which helps a lot. It's just a coincidence, we didn't know when we signed up.

Unless you're planning to leave the country, it will be important for your child to pick up English as well (I am fully aware of benefits of being bilingual, and we're a trilingual household, but still as an SN mom think it's important to give enough opportunities for English learning).

Do these studies include ASD children? I know this is true for neurotypical children but wondering if the same applies for ND ones...

Thank you. OP here. We used Voz speech therapy. Ana Maria is great. I'm trying to find other options since logistically would be better if we can find a practice closer to home. Yes, we're planning to expose our son to English eventually. I'm afraid that doing it too soon may delay even more his speech development. It's a tough choice.

Actually, exposure to two languages doesn't slow down language acquisition, there are many studies that confirm it. The benefit of more than one language is the creation of new neural pathways and neuroplasticity that comes with it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

I was looking last year and found it really difficult to find services in Spanish. If you're in DC, VOZ speech therapy has been recommended to me but I didn't end up using it. All of my child's services are in English, his default language is Spanish and there are some teachers and therapists who can understand some Spanish, which helps a lot. It's just a coincidence, we didn't know when we signed up.

Unless you're planning to leave the country, it will be important for your child to pick up English as well (I am fully aware of benefits of being bilingual, and we're a trilingual household, but still as an SN mom think it's important to give enough opportunities for English learning).

Thank you. OP here. We used Voz speech therapy. Ana Maria is great. I'm trying to find other options since logistically would be better if we can find a practice closer to home. Yes, we're planning to expose our son to English eventually. I'm afraid that doing it too soon may delay even more his speech development. It's a tough choice.

Actually, exposure to two languages doesn't slow down language acquisition, there are many studies that confirm it. The benefit of more than one language is the creation of new neural pathways and neuroplasticity that comes with it.

Do these studies include ASD children? I know this is true for neurotypical children but wondering if the same applies for ND ones...

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thank you for taking the time to answer. It is comforting to see we're not alone. We are convinced that early intervention is key. Just trying to figure our what kind of intervention is best for him. He already does PT, and we may incorporate OT services as well. We may need to go back to SPT.

Can someone recommend SPT, ABA services, or social skill groups in Spanish? My son's first language is Spanish, which is another hurdle for us. He does PT with an English-speaking provider, and I wonder if this limits what he can do in the session.

I was looking last year and found it really difficult to find services in Spanish. If you're in DC, VOZ speech therapy has been recommended to me but I didn't end up using it. All of my child's services are in English, his default language is Spanish and there are some teachers and therapists who can understand some Spanish, which helps a lot. It's just a coincidence, we didn't know when we signed up.

Unless you're planning to leave the country, it will be important for your child to pick up English as well (I am fully aware of benefits of being bilingual, and we're a trilingual household, but still as an SN mom think it's important to give enough opportunities for English learning).

Thank you. OP here. We used Voz speech therapy. Ana Maria is great. I'm trying to find other options since logistically would be better if we can find a practice closer to home. Yes, we're planning to expose our son to English eventually. I'm afraid that doing it too soon may delay even more his speech development. It's a tough choice.

Actually, exposure to two languages doesn't slow down language acquisition, there are many studies that confirm it. The benefit of more than one language is the creation of new neural pathways and neuroplasticity that comes with it.

Do these studies include ASD children? I know this is true for neurotypical children but wondering if the same applies for ND ones...

These are studies specific to ASD. I also consulted with the specialists who treat my child (neurodevelopmental psychologist in private practice who gave the diagnosis, dev ped at Childrens, SLPs in KKI and the special ed teacher in PEP), as well as one of the top specialists in KKI's CARD. All said not to go from 2 languages to 1. That being said, the kiddo is very verbal since 1.5 years and is probably hyperlexic, so with a different profile in may be not a 100% endorsement, but the studies are pretty consistent.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7370402/
https://www.news-medical.net/news/20210603/Bilingualism-allows-autistic-children-to-compensate-for-certain-fundamental-deficits.aspx