Talk to me about autism

[AimeeM]

The Marvelous Flying Marco had a private evaluation done with a child psychologist who specializes in autism (actually, that's all she does). The local clinic had an insane waitlist and this woman came highly recommended.

She met with me and Marco three times. The first time she evaluated him in an unstructured "just watch" type of way; the second portion was a three hour long more intensive evaluation that included an IQ test; the third time was today - to give us the results of his evaluation.

He is autistic, on the severe end of the spectrum, and will require a Level 3 Support System for some things; Level 2 for others. 

Also diagnosed is a receptive and expressive language delay.

She isn't sold on his IQ results, or at least doesn't put much stock in them right now, because the results were "scattered" - his strong areas were really, really, really strong; his weak areas were really, really, really weak/delayed.

 

We really liked his psychologist. She is super knowledgable and has been in this field since the 80's.

 

Here's where I'm super hesitant. While admitting that ABA therapy isn't a ton of fun for the kid, she has recommended a minimum of 20-30 hours WEEKLY of aba therapy - but her preferred number would be more like 40 hours weekly. That's asking my kid to essentially put in a full work day. She also admitted that not all therapists were great and that it may take some time to find one that was and that she was confident we would weed out the "not so good" ones quickly... but, really, I'm hesitant to put my baby through (possibly) several "not so good" therapists just to find a good one, so that he can essentially sign his life over to ABA therapy. 

I know I'm exaggerating and he isn't really signing his life away to aba therapy, but it's all still a bit raw.

Edited April 23, 2016 by AimeeM

[kbutton]

I would encourage you to come on over to the LC board. There are some social groups for parents of kids with autism as well. 

 

We have done only a little ABA (and only need a little), but the more I learn about it, the more impressed I am--there are some amazing things people do with ABA that is life-changing in a very good way. I previously had some really negative impressions about ABA that are not really the case most of the time now. Ideally, someone will chime in with great information (hopefully Lecka!). 

 

IQ scatter is very common among kids with autism, and autism influences how their cognitive skills play out sometimes as well. I truly think you'll find that expert help will target things that need work while capitalizing on his strengths. 

 

We have several labels spread out over two kids, and all therapy involves a learning curve when you find a good therapist, and a good therapist learns about your child and your family. It's hard to take that big first step for any new therapy, but then you start learning, and things work out.

 

http://www.ocali.org/    This site has some great information. You might dig around there.

 

:grouphug:  :grouphug:  :grouphug:

[MrsMommy]

I've been blogging about our experiences with autism for almost eight years. It is a lot to take in at first, and I've found that I went through the stages of grief when our son was diagnosed. We haven't done ABA therapy, but we did enroll him in a special ed program shortly after his diagnosis, which was a lot of therapy, some play, and some socialization. We had the same kind of experience with IQ, which was really hard at the time, but he is doing great in school (mainstreamed) now!

 

Just give yourself time to process, and be kind to yourself. It can be a really hard thing, especially in the beginning, but it can also be very rewarding!

[Innisfree]

Our experience of ABA has been very positive. Our dd looks forward to ABA time, and her relationship with her therapist is somewhere between what she might have with a (much) older sister and what she might have with a good babysitter. There's a lot of fun involved, as well as some hard work.

 

We received the same warning to choose a provider carefully. It really concerned me at the time: I hardly knew what ABA was, or what it should look like, and I was supposed to choose carefully? Maybe we were just really lucky, I don't know. Our choice ended up being dictated by who was available. But it's been great. I see a lot of progress.

 

See what choices you have locally, but don't worry unless you see problems. I hope things work out as well for you as they have for us.

[Crimson Wife]

Insurance will most likely limit your ABA funding to 20-25 hours/week, especially if he's old enough for district SPED preschool. You don't have to enroll him in the district preschool, but insurance will not fund extra hours of ABA just because you've declined preschool. I've never heard of anyone getting 40 hours/week funded.

 

My DD had 20 hours/week funded until she started 1st grade, and then it got cut to 15 hours/week.

 

I would strongly encourage you to observe the clinics if they will allow it (centers typically will but ones that only do in-home sessions probably won't). A good ABA program will basically look like the child has an amazing nanny who uses play to work on language, social skills, self-help skills like toileting, etc. in a very naturalistic way. It isn't always fun & games for my DD but most of the time it is.

[GoVanGogh]

:grouphug:

 

My child has mild cerebral palsy with autism.

 

Finding a good therapist can be challenging. We went through two not-so-great OTs before finding a wonderful one. We were incredibly fortunate to find a wonderful speech therapist the first time; we are still with her today.

The hard thing for me to grasp was that - therapy wise - it felt like a life sentence. That is both good and bad. The good part of it - Take your time. Don't rush into any decisions. Remember that you can always shop around. Ask lots of questions. The bad - Therapy does take a lot of time, energy and money. Do what you can now to lighten your load. Ask for help. Take care of yourself.

 

:grouphug:

[Crimson Wife]

I would also encourage you to find out how to get your child on the Medicaid waiver. My daughter has Medi-Cal to wrap around our private insurance and it picks up the deductible & co-pays for any provider who accepts Medi-Cal (including the ABA agency).

 

Am I remembering correctly that you're in NC? Here is some info on their Medicaid waiver program: https://www2.ncdhhs.gov/ncinnovations/

[LucyStoner]

My main advice for ABA is to get an agency that will come to you. In home and in community support is, in our experience, easier to integrate into your schedule and more beneficial for the family because the clinical setting is artificial and doesn't match up with real life situations.

Edited April 23, 2016 by LucyStoner

[AimeeM]

Insurance will most likely limit your ABA funding to 20-25 hours/week, especially if he's old enough for district SPED preschool. You don't have to enroll him in the district preschool, but insurance will not fund extra hours of ABA just because you've declined preschool. I've never heard of anyone getting 40 hours/week funded.

 

My DD had 20 hours/week funded until she started 1st grade, and then it got cut to 15 hours/week.

 

I would strongly encourage you to observe the clinics if they will allow it (centers typically will but ones that only do in-home sessions probably won't). A good ABA program will basically look like the child has an amazing nanny who uses play to work on language, social skills, self-help skills like toileting, etc. in a very naturalistic way. It isn't always fun & games for my DD but most of the time it is.

It's my understanding that our particular insurance will fund what is written as "medically necessary" by the evaluation psychologist. Could be wrong, though. I don't plan on allowing 40 hours, though, so I'm not sure that it matters, lol.

 

Marco already qualified for SPED preschool, actually, but we weren't impressed and we declined.

We do actually have an autism-specific private school here and this official dx would open doors in that area.

[AimeeM]

My main advice for ABA is to get an agency that will come to you. In home and in community support is, in our experience, easier to integrate into your schedule and more beneficial for the family because the clinical setting is artificial and doesn't match up with real life situations.

Yep. I already told the psych that we would only do in-home, but she said that most in our area only operate in-home anyway. 

[LucyStoner]

It's my understanding that our particular insurance will fund what is written as "medically necessary" by the evaluation psychologist. Could be wrong, though. I don't plan on allowing 40 hours, though, so I'm not sure that it matters, lol.

 

Marco already qualified for SPED preschool, actually, but we weren't impressed and we declined.

We do actually have an autism-specific private school here and this official dx would open doors in that area.

One thing to keep in mind is the co-pays. Even with good insurance, most of the families we know have to limit the hours somewhat for financial reasons (including very well off families).

[AimeeM]

I would also encourage you to find out how to get your child on the Medicaid waiver. My daughter has Medi-Cal to wrap around our private insurance and it picks up the deductible & co-pays for any provider who accepts Medi-Cal (including the ABA agency).

 

Am I remembering correctly that you're in NC? Here is some info on their Medicaid waiver program: https://www2.ncdhhs.gov/ncinnovations/

SC :)

 

Our current EI therapist did say that she would walk us through applying for the medicaid waiver. I think our private covers ABA almost entirely, but the psych said that it's a 40-50K yearly venture, so even our relatively small portion would be very, very expensive. 

[AimeeM]

One thing to keep in mind is the co-pays. Even with good insurance, most of the families we know have to limit the hours somewhat for financial reasons (including very well off families).

Our state offers a medicaid waiver (that isn't dependent on family income) for life-long/chronic conditions like autism. This would be secondary and pay anything, autism-related, that isn't covered by our private insurance. 

[LucyStoner]

Not to be a Debbie Downer but another consideration is to check the waitlist time and the offerings from providers who accept the Medicaid as secondary insurance. Where we are, the Medicaid providers tend to offer more limited services to Medicaid patients and they may have much longer wait times. Not that this is right but it definitely goes on. Several agencies here who take Medicaid will only offer group sessions in office to patients with Medicaid, even if the patient also has private insurance.

 

I hope it's better in SC! It sounds like it may be. There's just a lot of factors where sorting through ABA providers (we have two sons with ASD).

[AimeeM]

Not to be a Debbie Downer but another consideration is to check the waitlist time and the offerings from providers who accept the Medicaid as secondary insurance. Where we are, the Medicaid providers tend to offer more limited services to Medicaid patients and they may have much longer wait times. Not that this is right but it definitely goes on. Several agencies here who take Medicaid will only offer group sessions in office to patients with Medicaid, even if the patient also has private insurance.

 

I hope it's better in SC! It sounds like it may be. There's just a lot of factors where sorting through ABA providers (we have two sons with ASD).

You aren't a Debbie Downer at all :)

There are long wait lists here for ABA regardless of insurance, unfortunately. There is a specific law here, and a specific type of funding, available to children with autism. I believe it's unique to SC, but I can't swear to that. 

 

I'm not sold on that we'll start ABA immediately. Honestly, the psych told us how wonderfully the ABA therapists work WITH our home life... coming to the movies with us, the playground, or specific places Marco has problems. Thing is, I'm not sure that I want a stranger involved with our life that intimately. I don't want a stranger at my middle son's specialist appointments or my oldest daughter's functions, or even just family outings. There are parts of our lives that are just personal and "just us" and I can't imagine someone being with our family essentially all day, almost every day, like the psych wants for us.

[LucyStoner]

You aren't a Debbie Downer at all :)

There are long wait lists here for ABA regardless of insurance, unfortunately. There is a specific law here, and a specific type of funding, available to children with autism. I believe it's unique to SC, but I can't swear to that.

 

I'm not sold on that we'll start ABA immediately. Honestly, the psych told us how wonderfully the ABA therapists work WITH our home life... coming to the movies with us, the playground, or specific places Marco has problems. Thing is, I'm not sure that I want a stranger involved with our life that intimately. I don't want a stranger at my middle son's specialist appointments or my oldest daughter's functions, or even just family outings. There are parts of our lives that are just personal and "just us" and I can't imagine someone being with our family essentially all day, almost every day, like the psych wants for us.

The flip side of that is that when things get really hard at home, it can be very nice to have support in the home. I would never do 40 hours a week for the reason you describe (also my kids are both high functioning and older than 3) but we have just started with 15 for one child and honestly, I am turning cartwheels. So many years of figuring it out alone. It's as helpful for me as it is for him.

[LucyStoner]

Another advice is to get on ALL the waitlists even if unsure. You can always say no once your name comes up on the list or if you don't like the provider early on, but you can't backdate your place on the list if you come to realize "oh good grief, I need that ABA stuff NOW!" We passed on several providers. Not a problem.

[myfunnybunch]

:grouphug:  :grouphug:  :grouphug:

 

I knew my dd would be diagnosed, even before her eval. It was still so, so, so hard to hear.

 

We did do ~30-40 hours of therapy. Part special needs preschool with individual work beforehand, part in-home play therapy with some ABA elements. I hired grad students from the university's speech and language and special ed programs to come and play/work with her daily.

 

ABA therapy can work with your home life. It is certainly appropriate to set clear family-specific boundaries. Any decent intervention program will be willing to work with you on what you feel is comfortable and appropriate for your family and child, and that includes not having strangers on family outings. It may mean that the therapists work on "family outing" skills (like staying with the group, for example, if that's a needed skill) in the home, and then you practice them on actual family outings, for example. 

[AimeeM]

:grouphug:  :grouphug:  :grouphug:

 

I knew my dd would be diagnosed, even before her eval. It was still so, so, so hard to hear.

 

We did do ~30-40 hours of therapy. Part special needs preschool with individual work beforehand, part in-home play therapy with some ABA elements. I hired grad students from the university's speech and language and special ed programs to come and play/work with her daily.

 

ABA therapy can work with your home life. It is certainly appropriate to set clear family-specific boundaries. Any decent intervention program will be willing to work with you on what you feel is comfortable and appropriate for your family and child, and that includes not having strangers on family outings. It may mean that the therapists work on "family outing" skills (like staying with the group, for example, if that's a needed skill) in the home, and then you practice them on actual family outings, for example. 

Yeah, the diagnosis didn't come as a surprise to me. The severity did. I never, not in a million years, thought we'd hear (or read, right there in black and white, 11 pages worth) "severe" or "Level 3 support necessary."

 

Edited April 23, 2016 by AimeeM

[Jan in SC]

Have you been to the Autism Speaks website? They have a lot of great information. I would be happy to help you make connections with the family that runs it. PM if you are interested.

[Crimson Wife]

I'm not sold on that we'll start ABA immediately. Honestly, the psych told us how wonderfully the ABA therapists work WITH our home life... coming to the movies with us, the playground, or specific places Marco has problems. Thing is, I'm not sure that I want a stranger involved with our life that intimately. I don't want a stranger at my middle son's specialist appointments or my oldest daughter's functions, or even just family outings. There are parts of our lives that are just personal and "just us" and I can't imagine someone being with our family essentially all day, almost every day, like the psych wants for us.

 

Our agency has 3 interventionists on the team. One girl does Tuesdays and half of the long Wednesday session (my DD's school has early dismissal that day). Another does the other half of Wednesday. The 3rd does Thursdays and Fridays. A big part of ABA is getting the child to generalize skills and having multiple interventionists on the team helps with that.

 

We do a mix of home, center, and community sessions. The center sessions allow me to take my other kids to their extracurriculars. Community outings include our support group's weekly park day and one-off things like getting a haircut (what we did today). I usually have an interventionist come with DD to her various health appointments but it depends on what it is. The audiologist and the optometrist, yes. The child psychiatrist and the medical geneticist, no.

[Scarlett]

(((((Hugs))))) no experience but lots of compassion .

[NorthwestMom]

It is hard to hear those kind of reports even when you know what is coming. It's worse when you don't expect it. :grouphug: :grouphug: :grouphug:

 

Let yourself feel the feelings and move toward your new reality.

 

I hope you decide to give ABA a real shot. It is generally considered the most effective therapy to improve behaviors in kids with autism, and the younger you start, the better your chances of making significant progress.

[Tsuga]

:grouphug:  No advice, just hugs. 

[AimeeM]

It is hard to hear those kind of reports even when you know what is coming. It's worse when you don't expect it. :grouphug: :grouphug: :grouphug:

 

Let yourself feel the feelings and move toward your new reality.

 

I hope you decide to give ABA a real shot. It is generally considered the most effective therapy to improve behaviors in kids with autism, and the younger you start, the better your chances of making significant progress.

I probably will give it a shot. It was still too hard last night to consider. I have no doubt that I will not go for 40 hours weekly, lol, but I could see 20 hours or so.

[bettyandbob]

I don't know the research currently on ABA. I know that some therapies have to be done all the way or they are not very effective. So, you may want to look up current research. It may be that 20 hours a week won't help your ds very much, while 40 a week over a year or so results in big differences.

 

I do know a family who created a 40 hour a week program before ABA was standard. They used grad students from local universities to create the intense schedule. They had one therapist who oversaw the whole program. The therapy team would meet twice a month to change the plan and make sure each person was doing everything identically.

 

The difference I saw in that boy over months was huge. The boy was 4 when I first met the family. I can't describe everything I saw because this was in 1990. I was their advocate in their case to get services from the local school district.

 

ETA the main therapist regularly consulted with Lovaas. I just looked him up. Based on what I saw this family must have been one of the earlier participants in his research. Today, the Lovaas method recommends 30-40 hours of ABA weekly.

Edited April 23, 2016 by Diana P.

[MedicMom]

This may not seem much now, but a diagnosis of "severe autism" will help you get services and will open doors that would be shut otherwise. It is not necessarily predictive at this point but he will be able to get services.

I also recommend Medicaid waiver wrap around services. I am fighting to get them for my son, but his diagnosis isn't severe enough. You probably won't have to fight for them. I have heard great things about ABA; its at least worth trying.

[AimeeM]

I don't know the research currently on ABA. I know that some therapies have to be done all the way or they are not very effective. So, you may want to look up current research. It may be that 20 hours a week won't help your ds very much, while 40 a week over a year or so results in big differences.

 

I do know a family who created a 40 hour a week program before ABA was standard. They used grad students from local universities to create the intense schedule. They had one therapist who oversaw the whole program. The therapy team would meet twice a month to change the plan and make sure each person was doing everything identically.

 

The difference I saw in that boy over months was huge. The boy was 4 when I first met the family. I can't describe everything I saw because this was in 1990. I was their advocate in their case to get services from the local school district.

 

ETA the main therapist regularly consulted with Lovaas. I just looked him up. Based on what I saw this family must have been one of the earlier participants in his research. Today, the Lovaas method recommends 30-40 hours of ABA weekly.

I think that I would be more willing to try 40 hours weekly if it didn't seem to be so hit or miss with the therapists. If I find one that fits well into our lives and that I trust I would probably feel differently. For a family that really values family-only time, and believes all children should have a significant amount of "down time", it just seems... I don't know, intrusive and extreme. 

I really hate that this therapy obviously has a limited number of therapists, though. It makes me feel like we'll essentially be stuck with whomever eventually has an opening. I'm spoiled I think, with how our regular medical services work - I have the ability to shop around, interview, and choose the medical professionals I think will work best for our family and for that particular situation. It doesn't sound like I'll have that advantage here and it's intimidating to think about.

[Terabith]

I wonder if it's possible to do a combination of ABA and something like Floortime?

[AimeeM]

I wonder if it's possible to do a combination of ABA and something like Floortime?

What is floortime?

[JFSinIL]

"Also diagnosed is a receptive and expressive language delay.

She isn't sold on his IQ results, or at least doesn't put much stock in them right now, because the results were "scattered" - his strong areas were really, really, really strong; his weak areas were really, really, really weak/delayed."

 

My son had very similar results.  Unless the professional uses a test aimed at judging the IQ of a deaf person (the Leiter is one, there is another but I forget the name as it has been a while) the language delay will muck up the results and you won't get an overall accurate IQ.  

 

Has the boy been tested by an audiologist specifically looking for auditory processing delay (which can be the cause the the language problems)? We used http://www.dr-ferre.com/ she did extensive testing, was recommended by our pediatric neurologist.  Ferre, among other tests, did one with electrodes (?) that was a Cortical evoked auditory potential and showed pretty severe processing delay.  Our pediatric neurologist also had a SPECT scan done, which showed reduced blood flow in parts of the brain. Joe also had overnight, unmedicated EEGs that showed abnormal activity in the part of the brain that processes language, basically also is supposed to put language learned during the day into long-term memory. Due to the abnormal activity going on, this was not happening, and Joe would wake up having lost whatever language he had learned the previous day.  Ok, this is all in lay-person terms, as it has been almost 20 years since all this testing, and I am sure by now they have even better tests in their arsenal. Point is, we did ABA too, through a provider approved by Lovaas (who I met at a conference!) but Joe did not make much progress until his auditory processing speed was improved.  Which was done via FastForWord (is that still out there - it is/was a computer game based therapy) and, more effectively, medication.  Depakene and prednisone.  These dealt with the abnormal EEG (and Joe had been having those short staring spells, two neuros said "of course he stares, he is autistic". it was the third one who said "let's find out what is going on, these look like petit mal seizures")  and the reduced blood flow.  Long story short, while vastly improving Joe's auditory processing speed and thus dramatically reduced his expressive/receptive language he still has autism, but now he has been able to use language a lot better. And, at the time, actually make progress and benefit from the $$$ and time-consuming ABA!!!   So don't just do ABA without making sure the child has the best chance to fully benefit from it.   Hope this makes sense.

 

Sorry of any typos I missed.  I am, after all, the tie Po queeen.

Edited April 23, 2016 by JFSinIL

[AimeeM]

That's a really fair, and accurate, point.

Marco was almost entirely nonverbal until closer to 3. Until that point, he has "Ma," "Da," "Dah" (dog), and his alphabet, alphabet sounds, and numbers (he's been obsessed with letters and numbers since around 18 months old). He had speech therapy and his speech therapist did not believe he had a "speech" issue as much as he had a processing problem. Still, now, he drops entire words or sounds from words, in sentences.

If we say "Do not hit Nico," he repeats "Hit Nico," for example. He will be 4 in June.

He has had an audiology test, with an audiologist at an audiology center, but it was hearing specific, not for processing. He also refused to take part in part of the test. 

 

Scattered, on the IQ test, looked like this:

Could count objects (showing one to one correspondence skills and understanding) much higher than usual

Could NOT follow two step directions without help

 

Within his regular therapy, this looks like:

If a toy, or block, has letters or numbers on it, he will immediately, almost exclusively, focus on those characteristics of the toy, foregoing what the therapist wants him to DO with the toy (build, etc).

Can recognize which piece a puzzle needs, and point it out easily, but cannot "fit it in" to the space (motor planning?).

 

"Also diagnosed is a receptive and expressive language delay.

She isn't sold on his IQ results, or at least doesn't put much stock in them right now, because the results were "scattered" - his strong areas were really, really, really strong; his weak areas were really, really, really weak/delayed."

 

My son had very similar results.  Unless the professional uses a test aimed at judging the IQ of a deaf person (the Leiter is one, there is another but I forget the name as it has been a while) the language delay will muck up the results and you won't get an overall accurate IQ.  

 

Has the boy been tested by an audiologist specifically looking for auditory processing delay (which can be the cause the the language problems)? We used http://www.dr-ferre.com/ she did extensive testing, was recommended by our pediatric neurologist.  Ferre, among other tests, did one with electrodes (?) that was a Cortical evoked auditory potential and showed pretty severe processing delay.  Our pediatric neurologist also had a SPECT scan done, which showed reduced blood flow in parts of the brain. Joe also had overnight, unmedicated EEGs that showed abnormal activity in the part of the brain that processes language, basically also is supposed to put language learned during the day into long-term memory. Due to the abnormal activity going on, this was not happening, and Joe would wake up having lost whatever language he had learned the previous day.  Ok, this is all in lay-person terms, has it has been almost 20 years since all this testing, and I am sure by now they have even better tests in their arsenal. Point is, we did ABA too, through a provider approved by Lovaas (who I met at a conference!) but Joe did not make much progress until his auditory processing speed was improved.  Which was done via FastForWord (is that still out there - it is/was a computer game based therapy) and, more effectively, medication.  Depakene and prednisone.  These dealt with the abnormal EEG (and Joe had been having those short staring spells, two neuros said "of course he stares, he is autistic". it was the third one who said "let's find out what is going on, these look like petit mal seizures")  and the reduced blood flow.  Long story short, while vastly improving Joe's auditory processing speed and thus dramatically reduced his expressive/receptive language he still has autism, but now he has been able to use language a lot better. And, at the time, actually make progress and benefit from the $$$ and time-consuming ABA!!!   So don't just do ABA without making sure the child has the best chance to fully benefit from it.   Hope this makes sense.

 

Sorry of any typos I missed.  I am, after all, the tie Po queeen.

 

Edited April 23, 2016 by AimeeM

[JFSinIL]

First off, love the name Marvelous Flying Marco :-)

Second, my Joe always passed his hearing tests.  Problem is not in the ear - it is the brain's processing speed (and possibly ability to retain the info).  That Marco repeats the end of sentences is a red flag - that, and echolalia (repeating the last thing said) is a sign the person is trying to make sense of what they are hearing.  But the brain is processing too slow and all they get is close to gibberish or the end sounds of words/sentences.

Joe's first speech therapist was a nice gal, very young, and she thought Joe had a massive vocabulary as she would show him a ball and ask "Joe, is this a ball?" and he'd respond "ball" - he was just echoing the last thing he heard, but she thought it was spontaneous speech.  We wasted the years from age 3 - 5 not getting the right treatment for Joe.  It was as if he was deaf for five years - you don't make up that kind of lack of language development.

Poor receptive language (gee, if your processing speed is poor of course language makes little sense to you so you can't follow instructions etc. - heck, why even pay attention) can make a kid look more autistic than they may truly be. 

A good audiologist who specializes in auditory processing delays will be able to test the kid whether they want to cooperate or not ;-)   Good Luck!

[redsquirrel]

I just want to give you my support. I have dipped a toe in the lake you are wading in, so I don't have much to offer.  But, years back, when we were looking for answers, the one thing I found consistently across all sorts of treatment modalities is ...earlier is better and doing more earlier will pay off later.  I was ready to commit if need be...I didn't have to, so take my words with that in mind, but I would have gone for the 40 hours up front and then seen where it led. 

 

My son ended up needing a LOT of therapy but not ABA, or anything autism related, but I've never regretted those years spend working with some really good professionals. it upended our life, but became normal very quickly. And more did make a difference with a young child. That became very obvious very quickly.

 

You are the expert on your child, so you know what is best. You are in a very different place than I ended up, so I hope my words aren't causing pain or self doubt, that is not my intention in any way. Mostly I just want to give you my support no matter what you decide.

[SproutMamaK]

I wonder if it's possible to do a combination of ABA and something like Floortime?

 

Yes, we did this. At younger ages it seemed totally natural. For rewards, he wanted to sit and play and engage in activites he found enjoyable, and the skills we were working on that age also had to do with how to play and interact in healthy ways, so even if we had been going for pure ABA it would in practice have worked out to a combination of Floortime and ABA.

[Mrs. Tharp]

I hear your concerns about ABA. We had a bad experience with it early on and never went back, though we did do social groups and work with therapists who used it. It can be helpful, but it is incredibly expensive. I'm going to list some things to think about below. I got this straight from Karla Fisher's website, ASDCulture and I wish I had heard it when my son was diagnosed at three. 

 

Autism is a multi-billion dollar industry. 

 

There are no "Silver Bullets" or "Quick Fixes".

 

ANY therapy is only as good as the person administering it. (From me: Do not waste time with a mediocre therapist, no matter how "nice" they are. There are many well-intentioned but ineffectual people working with autistic kids! You should see improvements quickly. If not, discontinue the therapy or try someone else.)

 

NO therapy is worth sacrificing childhood to meet NT milestones.

 

Therapy that works for one could destroy another. 

 

Research on therapy is weak at best. 

 

Trust your gut. You know what is right. 

 

 

 

From me: Good luck on your journey! Remember, he's still the same kid he always was, diagnosis or no. 

 

I just realized, you're getting ABA for free! Hurray!!!!

 

Edited for clarity. 

Edited April 24, 2016 by Mrs. Tharp

[kbutton]

I looked at some older threads, and this one has some good information about ABA and about what to ask. http://forums.welltrainedmind.com/topic/586827-getting-started-with-aba/ 

[chiguirre]

Sorry for the late reply, I just saw this thread.

 

First off, :grouphug: .

 

ASD sucks. Severe ASD sucks an order of magnitude worse. The difference between a kid with relatively mild autism and a kid with severe autism (even if they do have some speech) is vast and their outcomes are very, very different. Geezle goes to an applied skills class at the local high school, has friends, enjoys his life and will be able to live mostly on his own with some job/apartment supports.  GW is still going to an ABA based center because I do not trust the local school to keep a close enough eye on him so that he doesn't injure others. He can communicate his needs verbally (this is awesome, it makes life so much easier for him and for us) but he can get frustrated easily and occasionally lashes out. That didn't matter when he was small, now that he's 6'1" and very strong, it's a constant worry. He will never, ever have a normal job, even with a coach. He cannot live in any placement that requires that a resident not be a danger to himself or others (this is most of the nice ones). Our primary concern all the time is making sure we're safe around him. Our secondary concern is that no one call the police on him. I'm not saying this to add to your worries but I think you need a realistic picture of what you might be facing and most stories about autism tend to focus on higher functioning kids. There is a huge gulf between the ends of the spectrum and it's better to prepare yourself for the worst rather than go through the grieving process over and over again.

 

Looking back, I would have preferred to have put GW in ABA based therapy at 3 instead of 4. I'm not sure it would have made a difference but it might have helped his language skills earlier. He has made progress but it's always been slow and steady, he never made the huge leaps Geezle did. In your place, with that diagnosis, I would not pussyfoot around with anything less than full time, intensive therapy. You might still end up where we are now, but you won't have any regrets. You may also luck out and MFM might not be too physically intimidating as a teen. Most of GW's peers can be aggressive but most of them just can't do the same damage with one push. 

[SproutMamaK]

Just as a word of encouragement, my son was also diagnosed as having severe autism at age 2. He had no words, wouldn't engage with anyone but me (including his brother who was only 14 months younger), stimmed almost constantly, etc. He's now 12 years old and, while I won't say he's indistinguishable from a neurotypical child, I can say that the worst of it is that he's socially awkward and has some trouble relating to his same-age peers when they talk about sports, etc. Basicaly, he's a geek. ;) Wihle of course that's purely anecdotal, he thrived on play-based ABA. The waitlists were huge so for 2 years we paid out of pocket for him to get 20 hours a week. It was worth it. We only had 1 therapist that didn't mesh well with our family, and we mutually agreed to part ways, with no drama, after less than a month. (Because they get so much therapy, you usually have more than 1 therapist going at a time as well, which means the system inherently has some checks and balances.)

The fact that your son has any words at all is HUGE. That means he is capable of speech! It may take quite a while, but therapy can hep draw that out.

Basically what I'm saying is... I know that feeling of fear an uncertainty and hopelessness (mingled with hope that almost feels so optimistic that you think it must be naive to have any hope at all). It's okay to feel all those things. And there IS hope. There are no guarantees and no promises, but there is definitely hope.

[Alexigail]

I used to work as an ABA therapist and my son is on the spectrum.  I wouldn't personally put my son into an ABA program, although some people see results from it.  My sister in law put her child through intensive ABA (40 hrs/week) when she was young and has regrets about it now.  I'm happy to talk more in a PM if you have specific questions.  I don't want to take from those who feel great about ABA, but I think the evidence is mounting that there are long term effects and ethical issues with this form of therapy.  

For what it's worth, I'm not talking about horrible experiences or abuses or anything like that.  I simply question the effectiveness / ethics of such a model and have read lots of accounts of adults who had ABA who found it to be degrading and manipulative.  Having done the work myself, I agree.

 

 

[katilac]

I used to work as an ABA therapist and my son is on the spectrum.  I wouldn't personally put my son into an ABA program, although some people see results from it.  My sister in law put her child through intensive ABA (40 hrs/week) when she was young and has regrets about it now.  I'm happy to talk more in a PM if you have specific questions.  I don't want to take from those who feel great about ABA, but I think the evidence is mounting that there are long term effects and ethical issues with this form of therapy.  

For what it's worth, I'm not talking about horrible experiences or abuses or anything like that.  I simply question the effectiveness / ethics of such a model and have read lots of accounts of adults who had ABA who found it to be degrading and manipulative.  Having done the work myself, I agree.

 

I have seen some blog posts and such about this, current adults who wish they hadn't been put into ABA. 

 

What do you and others recommend instead? 

[AimeeM]

My son's former speech therapist just PM'd me and suggested RDI as a possible alternative (for Marco specifically). I'm not sure exactly what it is, but...

[LucyStoner]

I wonder if it's possible to do a combination of ABA and something like Floortime?

In most cases, ABA is the behavior support the insurance will cover. That said, because it's ABA that can be billed to insurance, the providers are increasingly fairly flexible in their approaches and strategies. I know people doing ABA where it really doesn't look that different from floor time and is a lot more play based that people tend to associate with ABA. At least here, it seems less rigid than it did even 5 years ago. For example, I made it clear to our ABA provider what was and was not acceptable as far as incentives and disincentives and they have followed the lead of his long standing therapist who is a critic of parts of ABA and uses a gentle parenting approach. The field, and the methods used, are evolving.

Edited April 24, 2016 by LucyStoner

[prairiewindmomma]

RDI: https://www.autismspeaks.org/what-autism/treatment/relationship-development-intervention-rdi

[kbutton]

In most cases, ABA is the behavior support the insurance will cover. That said, because it's ABA that can be billed to insurance, the providers are increasingly fairly flexible in their approaches and strategies. I know people doing ABA where it really doesn't look that different from floor time and is a lot more play based that people tend to associate with ABA. At least here, it seems less rigid than it did even 5 years ago. For example, I made it clear to our ABA provider what was and was not acceptable as far as incentives and disincentives and they have followed the lead of his long standing therapist who is a critic of parts of ABA and uses a gentle parenting approach. The field, and the methods used, are evolving.

 

:iagree:   

 

When I initially read about RDI (which some people on the boards have had success with, though I don't know if they had children at support level 3), it sounded like stuff I'd done that worked with my son when he was little. Again, we had a late diagnosis, and my son is at level 1 support, so while I was pulling out my hair, I could sometimes stumble onto things that really helped. Anyway, then I heard about more up-to-date and recent ABA, and I again thought, this is a lot like the things I did with my son that worked and not that different from what I've read about RDI, just maybe executed a little differently.. Not only that, but I kept thinking that the things that worked when I did them would have worked more often, better, etc. if I'd had someone who knew good ABA stuff and had been helping me--things like knowing what to work on first, knowing how to evaluate if something was learned, knowing how to change what I was doing just a bit to make it more useful, etc. :-) The person that diagnosed my son said we'd apparently been doing a lot of things right, but we truly often had NO IDEA what was working and what was not because we had no understanding of how our son's undiagnosed autism was influencing his behavior. It was exhausting to be constantly guessing and pleasantly surprised when something worked. It was absolutely devastating to have something stop working, work some of the time, or seem utterly random after major investments of time and effort. A good therapist can help work through this. My son's therapy right now works on specific skills that are within his reach that make him a more tolerant and nice person (they do not make him less autistic--they just help him over that hump of wanting something enough to go for it). They are goals he wants for himself, but without ABA, those goals would be a lot harder to meet. My son has always been afraid of not being able to meet expectations (no matter what they are, how they are presented, etc.), and ABA is actually proving to him that he CAN meet expectations. That is worth a lot to me as a mom and to him as a kid. He is one of the hardest working kids I know, but he gets so worried about not being able to do what he wants to do. I would have missed this if I had not listened to people give me a more realistic picture of what ABA can look like.

 

Whatever you decide to do for Marco, please research your options. Figure out what reasonable goals are, and then find someone who can meet those goals. Talk to other people IRL (via support groups, etc.) who can tell you about before and after behavior with various treatments, and be sure you are talking to people who are at least semi at peace with their child's diagnosis. Bring up specific issues you are having with various providers and find out how they might approach a problem (I know other threads have mentioned safety as being a HUGE concern). Ask flat out what the limitations to any treatment are, and compare those limitations. I am sure the person who diagnosed your son can give you some realistic goals. It's not settling to set realistic goals--therapies are meant to help a child be the best Marco or Johnny or Joan, etc. that they can be. If the therapy is good therapy, and the child's potential turns out to be greater than originally estimated, the child will be able to reach his or her potential with communication and goal setting over time with a good therapist.

 

Don't totally reject an avenue of therapy from secondhand experience. I am guilty of doing that and then wishing I'd been able to go back and use that therapy earlier. 

[SporkUK]

I am autistic as is at least my eldest [we chose not to go the diagnosis route with younger children because it was horrible and only caused setbacks and trauma that were not worth it]. My eldest, now 11, was nonverbal for 4ish years - he only started understanding questions at 6 and still does a lot of sound effects even with his words. Every therapy recommended made things worse and I regret doing all of them.  If you can, find your local autistic community - preferable with autistic adults and kids - so they can help you find good professionals.

 

I am active in international adult autism community and have been for years. I have yet to meet an adult Autistic person who likes ABA. Seriously - I attempted to do a poll once of one of the biggest community groups and could not get a single positive story. ABA is commonly called in the autistic community "autistic conversion therapy" due to the fact it literally originates from the same psychological methods and beliefs as gay conversion therapy and the common goal by many therapists is to make autistic people act as nonautistic acting as possible regardless of our comfort or wellbeing. It gets behavioral compliant results - and it also is responsible for the adult autistic communities that suffered through it to have a ridiculously high PTSD levels to the point that they are considered comorbid in many places. 

 

Problem now is because of the compliance results, many US insurances pay for ABA/ACT and only that and a lot of therapists use the label without actually doing ABA so people can afford them which make things difficult to clarify. There are lots of good ways to help that teach coping mechanisms and self awareness and work on supporting different types of communication and some therapists do them - but we also have therapists and schools for autistic people that are still using shock therapy, aversion tactics for compliance, removing alternative communication methods, tying down kids and...worse and all of that is under the label of ABA and all have been reported still being done this year. That's why so many have a kneejerk reaction to anything under the ABA label - it's now become an industry with free range if it "fixes" us.

 

Finding a therapist that will always allow you or another adult other than the therapist to always be present, does not use aversion methods for compliant, allows for all forms of communication and will not remove or refuse them, and allows the autistic child to say no without aversion tactics or denial of basics in response [teaching a child they cannot say no in therapy is a red flag - being able to say no is a hugely important social skill], and will work on mutually agreed priorities is the starting point. Also, for a child as young as yours, there shouldn't be any desensitization therapy - it's difficult for adults to work on, let alone a 3 year old. 

 

I understand the raw, I was there for years. I am a proud Autistic person, in the community, and I spent years trying to find something, anything, that would mean he had it easier than I had it. It all backfired on us because my local area has few good resources on this. What actually helped was finding him a  community he could connect to so he could see people like him  and I could find resources and people like me, working on his sensory issues so he stopped feeling overwhelmed all the time, and going step by step in what he needs. For a wee one, communication is likely a priority: a good speech therapist, sign language, alternative communication methods and devices can all help and be looked at together - they all help each other - as is creating an environment where they feel safe [which is different to what other people, even other autistic people, feel is safe because part of autism is the overwhelm and the brain treating 'normal' things as a threat preventing us from doing other things as well as lacking in parts of the brain that naturally filter out senses and stimuli which makes focus harder. What your child's brain has pegged as a threat will differ from everyone else's which is why communication and understanding to uncover and deal with them is crucial]. 

 

I would also recommend asperger experts [most of their stuff is aimed at kid older than yours but their videos on youtube explain well in detail how autistic minds work and good things to look for in therapies and in what order to deal with things. Lots of things like to deal with social skills first which are hard to learn if you haven't dealt with sensory or awareness that are less obvious but a major part of overwhelm that prevents social skills. Sensory Funnel is a good starter] as well as neurowonderful who also has youtube videos and tends to talk more about why autistic people tend to do things like stimming and meltdown. I would also look into the Sensory Diet which has a list of activities for different senses and body needs which can be good fun and also give you references on what stimulation helps or not in certain situations which can really help everyone. With the understanding these can bring, you can better find any outside help you and yours may need. 

 

EDIT: Also, do not fear the severe label. I know it hurts but it is literally a snapshot of certain skills. As you wrote, he is very strong in some areas and very weak in others. Everyone is like that. Everyone has needs - they're only special when society doesn't already meet their needs as it does for typical people. I know nonverbal autistic people who write books and academic papers, I know autistic people who have nonverbal episodes and still have their own and have adopted and have guardianship on several autistic children, I know verbal autistic people who struggle to find work but write and draw beautifully and care for their home and loved ones...the autistic spectrum isn't a straight line from mild to severe, it's as individual as everyone like each colour in the spectrum has its own value. We have strengths, weaknesses, and need to set up our lives to cope with those and, for our kids, we have to work to set up our lives while figuring out what those are. 

Edited April 25, 2016 by SporkUK

[AimeeM]

I don't want him to be "non-autistic" acting, though, if the way he is now is "autistic acting".

As many mini-heart attacks as he gives me, and as exasperating as he can be at times, I like him quite a lot just the way he is. I love him a ton, but I can also say that I sincerely like him. I don't want anyone to make him change who he is.

I want him to not hurt himself because he thought it was a good idea to use the mattress as a trampoline, or run through the house with his hands over his eyes; I want him to not throw himself into the wall because his tortilla chip's tip broke off, and I want him safe. All of his other little quirks or differences, though? I like him and I don't want anything, or anyone, to try to change him.

 

And he communicates beautifully most of the time with his very best friend (his older brother). For a kid who was just dx'd as also having serious expressive/receptive language delays, and noted as not maintaining a conversation, he just held a 10+ minute full (back and forth) conversation about Minecraft and Sick Bricks with his older brother. 

According to the paperwork, though, that he has friends doesn't really count because his friends are older than him. It's just listed that he has no real friends who are also peers (I assume they mean age peers). 

I am autistic as is at least my eldest [we chose not to go the diagnosis route with younger children because it was horrible and only caused setbacks and trauma that were not worth it]. My eldest, now 11, was nonverbal for 4ish years - he only started understanding questions at 6 and still does a lot of sound effects even with his words. Every therapy recommended made things worse and I regret doing all of them.  If you can, find your local autistic community - preferable with autistic adults and kids - so they can help you find good professionals.

 

I am active in international adult autism community and have been for years. I have yet to meet an adult Autistic person who likes ABA. Seriously - I attempted to do a poll once of one of the biggest community groups and could not get a single positive story. ABA is commonly called in the autistic community "autistic conversion therapy" due to the fact it literally originates from the same psychological methods and beliefs as gay conversion therapy and the common goal by many therapists is to make autistic people act as nonautistic acting as possible regardless of our comfort or wellbeing. It gets behavioral compliant results - and it also is responsible for the adult autistic communities that suffered through it to have a ridiculously high PTSD levels to the point that they are considered comorbid in many places. 

 

Problem now is because of the compliance results, many US insurances pay for ABA/ACT and only that and a lot of therapists use the label without actually doing ABA so people can afford them which make things difficult to clarify. There are lots of good ways to help that teach coping mechanisms and self awareness and work on supporting different types of communication and some therapists do them - but we also have therapists and schools for autistic people that are still using shock therapy, aversion tactics for compliance, removing alternative communication methods, tying down kids and...worse and all of that is under the label of ABA and all have been reported still being done this year. That's why so many have a kneejerk reaction to anything under the ABA label - it's now become an industry with free range if it "fixes" us.

 

Finding a therapist that will always allow you or another adult other than the therapist to always be present, does not use aversion methods for compliant, allows for all forms of communication and will not remove or refuse them, and allows the autistic child to say no without aversion tactics or denial of basics in response [teaching a child they cannot say no in therapy is a red flag - being able to say no is a hugely important social skill], and will work on mutually agreed priorities is the starting point. Also, for a child as young as yours, there shouldn't be any desensitization therapy - it's difficult for adults to work on, let alone a 3 year old. 

 

I understand the raw, I was there for years. I am a proud Autistic person, in the community, and I spent years trying to find something, anything, that would mean he had it easier than I had it. It all backfired on us because my local area has few good resources on this. What actually helped was finding him a  community he could connect to so he could see people like him  and I could find resources and people like me, working on his sensory issues so he stopped feeling overwhelmed all the time, and going step by step in what he needs. For a wee one, communication is likely a priority: a good speech therapist, sign language, alternative communication methods and devices can all help and be looked at together - they all help each other - as is creating an environment where they feel safe [which is different to what other people, even other autistic people, feel is safe because part of autism is the overwhelm and the brain treating 'normal' things as a threat preventing us from doing other things as well as lacking in parts of the brain that naturally filter out senses and stimuli which makes focus harder. What your child's brain has pegged as a threat will differ from everyone else's which is why communication and understanding to uncover and deal with them is crucial]. 

 

I would also recommend asperger experts [most of their stuff is aimed at kid older than yours but their videos on youtube explain well in detail how autistic minds work and good things to look for in therapies and in what order to deal with things. Lots of things like to deal with social skills first which are hard to learn if you haven't dealt with sensory or awareness that are less obvious but a major part of overwhelm that prevents social skills. Sensory Funnel is a good starter] as well as neurowonderful who also has youtube videos and tends to talk more about why autistic people tend to do things like stimming and meltdown. I would also look into the Sensory Diet which has a list of activities for different senses and body needs which can be good fun and also give you references on what stimulation helps or not in certain situations which can really help everyone. With the understanding these can bring, you can better find any outside help you and yours may need. 

 

EDIT: Also, do not fear the severe label. I know it hurts but it is literally a snapshot of certain skills. As you wrote, he is very strong in some areas and very weak in others. Everyone is like that. Everyone has needs - they're only special when society doesn't already meet their needs as it does for typical people. I know nonverbal autistic people who write books and academic papers, I know autistic people who have nonverbal episodes and still have their own and have adopted and have guardianship on several autistic children, I know verbal autistic people who struggle to find work but write and draw beautifully and care for their home and loved ones...the autistic spectrum isn't a straight line from mild to severe, it's as individual as everyone like each colour in the spectrum has its own value. We have strengths, weaknesses, and need to set up our lives to cope with those and, for our kids, we have to work to set up our lives while figuring out what those are. 

 

Edited April 25, 2016 by AimeeM

[monstermama]

I don't want him to be "non-autistic" acting, though, if the way he is now is "autistic acting".

As many mini-heart attacks as he gives me, and as exasperating as he can be at times, I like him quite a lot just the way he is. I love him a ton, but I can also say that I sincerely like him. I don't want anyone to make him change who he is.

I want him to not hurt himself because he thought it was a good idea to use the mattress as a trampoline, or run through the house with his hands over his eyes; I want him to not throw himself into the wall because his tortilla chip's tip broke off, and I want him safe. All of his other little quirks or differences, though? I like him and I don't want anything, or anyone, to try to change him.

 

My son's around the same age as yours, and was diagnosed a few months ago, and the diagnosing doctor recommended 20 hours of ABA in addition to the speech therapy and special needs preschool he was already doing.  I started calling ABA providers immediately and we've just, as of this week, gotten to the top of the waitlist at one provider.  Many of the providers weren't even taking more names for the waitlist.  One told me to call back in 6 months!

 

I'm the OP of the thread kbutton linked above.  I was initially very worried because of some of the things I read and heard were much more punitive than I was comfortable with.  We have a number of providers in my area, so I spoke with them beforehand to get an idea of their style (the specific example I asked about was potty training - an area DS is struggling with - and one that seems to draw out some extremes).  The ones I chose to go on the waitlist for were primarily play-based and positive discipline focused and seemed to treat the kids with respect.  Any provider that wouldn't give me a few examples of how they'd go about potty training or suggested methods I didn't like, I took off my list.

 

He's also getting a bit of ABA-style therapy at his preschool and I've seen an enormous difference in the way he interacts with others.  We don't have as much of a problem with - uh - over-exuberance ;) as you do, more like he's disengaged with other people more than anything else.  The preschool's helped him learn to interact with other kids better than I've been able to.  Instead of playing by himself at the playground, he now attempts to play with the other kids - chasing them, digging in the dirt near them, etc.  He doesn't have much speech, so I can't ask him how he feels about it, but he does seem to have more fun and he definitely asks to go to the playground more often than he did.  When we first started speech therapy, there was a lot of frustration - for him and us - because he simply could not communicate what he wanted or needed.  That's our goal for ABA - not necessarily to make him "normal" but to give him more options and make life less frustrating for all of us.

[PeterPan]

I'm finding our behaviorist is conversant on Floortime, RDI, Social Thinking materials, etc., so I don't think it's going to be as pigeoned as saying ABA *or* RDI *or* Floortime.  

 

If you are in NC (someone mentioned this), then Children with Disabilities Grant - North Carolina State ...

 

My ds' behavior is challenging enough that I can't just hire a babysitter.  It's a good reason to work on your ABA now, so he can have skills generalized and be able to be with someone else to give you a rest.  Remember too that some of the behaviors that are just pesky now are going to be more problematic as he gets bigger.  

 

 I hope you're able to find a BCBA you feel confident in.   :grouphug:

Edited April 26, 2016 by OhElizabeth

[Lecka]

Based on my town, I would be shocked to find anybody who does not know about Social Thinking. It is SO popular here!