Autism and early intervention.

JDean3204

Well-Known Member
Long story short my son is currently being observed by a development specialist for possible Autism. He is a littler over a year and a half and some early signs of ASD are definitely present.

My wife and I are just grateful he is a happy healthy little boy, but it has still been somewhat hard to swallow at times. We’re going to be able to enroll him in therapy through early intervention, the research I’ve done has been uplifting as early intervention can help to an extent.

Just wondering if anyone else in the JC community has dealt with a child on the spectrum? I understand if you don’t want to respond in public, a PM will be more than fine with me. Just looking for advice from other pilots in similar circumstances that have figured out the best ways to help their children out, and just as important helping their spouse out as they are the ones home dealing with the day to day issues that arise. So far my wife has been a true champion about all of this. As parents, we don’t view this as a setback for our son, but are wanting to try anything possible to help him thrive in life.
 
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My wife is a Registered Dietitian, I know in the past she’s mentioned people on the spectrum not eating sugar as it’s basically an opiate for them. I’m sure if he is someone will talk to you about it, but probably worth reading up on in the mean time.
 

Zapphod Beblebrox

Well-Known Member
My son was diagnosed over 25 years ago. If your child is less than two years old it is unlikely you will get a diagnosis of Autism. The reason being that the required developmental delays and deficits are not pronounced enough to qualify for the diagnosis. However if the signs are present a diagnosis of PDDNOS, or Pervasive Developmental Delay -Not Otherwise Specified may be used. This could change to Autism when the child is older and can be evaluated better.

In most states PDDNOS will allow you to get access to support and intervention. I live in a state, PA, where my son's behavioral intervention was paid for due to this diagnosis. The current recommended standard therapy is Intensive Applied Behavior Analysis. It's a program developed by a psychologist named Ole Ivar Lovass, a Norwegian / American clinical psychologist at the University of California, Los Angeles. His therapy / program has had great success in helping Autistic and PDDNOS children.

I am sorry to hear of your son's condition. However there is life after a diagnosis. My son, now 27, is still a fine person, funny, has a great singing voice, and is very well behaved and friendly. Most of this is as a result of his early behavioral intervention.
 

JDean3204

Well-Known Member
Well this Covid situation really put the early intervention on the back burner. The first month we had weekly phone calls instead of the house visits, but apparently the workers are now on furlough in our county. Those house visits were excellent for my son and for us, so that’s a bummer. Any chance of getting my son on ABA before November is done. I will say even with just my wife and I working with him he is making strong progress. At a few months shy of two years, he lacks all vocabulary but occasionally tries to toddler talk. He is becoming a lot more interactive, in my last stretch of days off I’d say I’ve noticed the most changes to date.
 

SteveC

Really?
Staff member
@JDean3204

My wife runs the birth-to-three early intervention program in our county, and the work they are putting in to support families within the constraints of the current situation is pretty incredible. I can see how the obstacles could cause a fall-off of quality of services in many places.

She is, obviously, a huge proponent of early intervention.

I asked her for input on your situation and she highly recommends these resources for parents:

autismnavigator.com

hanen.org
...especially the book and dvd “More Than Words

Both of these resources have very good strategies for all parents to use in daily routines while raising their children, but are especially effective for children with spectrum type development issues.

She said be very careful about non-vetted information and resources on the internet. There is a lot of wack ideas and suggestions out there.

She also stressed the idea that just because a child may get an Autism Spectrum Disorder diagnosis does not necessarily mean they will be limited later in life, just that they do/learn things differently. She said they often joke that some of the kids they work with will probably end up making way more money down the road than they do.

Based on her personal experiences she believes that many engineer/pilot types could well be on the spectrum (hey, wait a minute!).
 

///AMG

Well-Known Member
JDean....like SteveC, my wife is also in the early intervention business as a BCBA. I think her sentiments largely mirror those that Steve wrote.

I know a large part of her job has actually been working with the parents. She obviously can't be there all the time, and the parents become the default therapists the other 50-70% of the time, so it's important that they understand the process and goals and such. Sounds like you guys are doing just that. Your attitude is a good one. Tons of children (dare I say all) have developmental road blocks along the way to adult hood, not just kids on the spectrum. Looking at it as just another challenge that you can help your kid overcome is a great way of looking at it.
 

JDean3204

Well-Known Member
@JDean3204

My wife runs the birth-to-three early intervention program in our county, and the work they are putting in to support families within the constraints of the current situation is pretty incredible. I can see how the obstacles could cause a fall-off of quality of services in many places.

She is, obviously, a huge proponent of early intervention.

I asked her for input on your situation and she highly recommends these resources for parents:

autismnavigator.com

hanen.org
...especially the book and dvd “More Than Words

Both of these resources have very good strategies for all parents to use in daily routines while raising their children, but are especially effective for children with spectrum type development issues.

She said be very careful about non-vetted information and resources on the internet. There is a lot of wack ideas and suggestions out there.

She also stressed the idea that just because a child may get an Autism Spectrum Disorder diagnosis does not necessarily mean they will be limited later in life, just that they do/learn things differently. She said they often joke that some of the kids they work with will probably end up making way more money down the road than they do.

Based on her personal experiences she believes that many engineer/pilot types could well be on the spectrum (hey, wait a minute!).
Thank you for the links to those resources, I’ll be ordering that book today. The thing that agitated me is this is the point in his young life where the help was greatly aiding him in overcoming some road blocks in the process. So to see all that external quality help disappear has been hard, especially for my wife. As long as he continues to make progress, granted on his own timeline vs the “normal” is all we care about. Thanks again

edit**. I hope that doesn’t come across as selfish, I am completely aware that there are many families dealing with a myriad of issues without outside help that existed a few months ago. I now understand the frustration of being a parent and wanting something for your kid so bad that it can make or break your own day. It’s a deep feeling of knowing he will one day overcome or at least cope better, it will just take time and even more effort from me in the meantime.
 
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JDean3204

Well-Known Member
JDean....like SteveC, my wife is also in the early intervention business as a BCBA. I think her sentiments largely mirror those that Steve wrote.

I know a large part of her job has actually been working with the parents. She obviously can't be there all the time, and the parents become the default therapists the other 50-70% of the time, so it's important that they understand the process and goals and such. Sounds like you guys are doing just that. Your attitude is a good one. Tons of children (dare I say all) have developmental road blocks along the way to adult hood, not just kids on the spectrum. Looking at it as just another challenge that you can help your kid overcome is a great way of looking at it.
Thank you for that.

Im more so worried about how my wife is handling it. Last year I took a job that requires 16 days on the road so she has a lot on her plate when I’m gone with keeping him on that path of progression. Now that those valuable external resources aren’t available she does feel alone in the process, but she is doing a phenomenal job imo. When I’m home, I make sure that every minute I can soak up with him, teaching and playing with him doesn’t go to waste. We will be looking into those links that Steve-C sent and ordering that book. It sounds a little cheesy but we really get excited for the small victories, even though at almost age two, voice imitating would be a flag to some, for us it’s a relief because atleast he is starting to verbalize something. Gives us hope that’s for sure.
 
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cezzna

Well-Known Member
Been there done that. In 2004 my son was diagnosed ASD at the age of two. Watch your wife closely, the divorce rate for special needs marriages is north of 80%. My ex climbed into a bottle and went bed hopping so it all came down on me. I ended up divorcing, taking full custody, and ramping up early intervention. The only statistically proven therapy/treatment is behavioral therapy. For four years me, my family, nanny drove him 60 minutes each way for half day intensive intervention. I also ramped up numerous DAN doctor protocols(pseudo science). The long and short, none of it worked except for behavioral therapy, and six months after four years of intensive therapy, those results faded too.

Then we fought the school system and mostly lost. That was ok because I was done fighting. From age 6-11 he was happy, nonverbal , not potty trained. Age 12+ was a nightmare. Puberty brought aggression . He became aggressive towards himself and others. Self injury brought on an endless cycle of hospitals, psychiatrists, dead ends. He ended up trapped in an intermediate level psychiatric hospital, not suitable for discharge, with nowhere to go. He deteriorated and ended up in critical care. From there I had no other option than to turn custody over to the state. Now he is in a 24 hour facility funded by the state, still nonverbal and not toilet trained. He is as happy as he can be and I am on the board of directors of the facility.

It’s a long bumpy ride, a marathon. PM me anytime for advice or just to vent.
 

cezzna

Well-Known Member
My previous post probably comes off as very pessimistic. I’m sorry, you’re just getting into this and most kids on the spectrum are much more responsive to therapy than my son was. I would caution you against many of the pseudo-science treatments. There are so many, and they prey on hopeful people. The beginning was rough, but the middle years really were awesome. My son was VERY happy and well adjusted. We had given up on chasing drastic changes and I think he responded accordingly. He was absolutely overly stimulated from continuous intervention. Once left to his own, for the most part, he really had a joy that cannot be described. He loved to spin things, jump on a trampoline and just be.
The teenage years were tough, but now at 18, he is much more mellow.

You can do this!
 

TUCKnTRUCK

That guy
Well this Covid situation really put the early intervention on the back burner. The first month we had weekly phone calls instead of the house visits, but apparently the workers are now on furlough in our county. Those house visits were excellent for my son and for us, so that’s a bummer. Any chance of getting my son on ABA before November is done. I will say even with just my wife and I working with him he is making strong progress. At a few months shy of two years, he lacks all vocabulary but occasionally tries to toddler talk. He is becoming a lot more interactive, in my last stretch of days off I’d say I’ve noticed the most changes to date.
With all the homeschooling lots have people have found that parents with time, proper tools and guidance have really made big improvements for a lot of the IEP students. (Far beyond what was happening in school). The constant presence/ getting more than 30 minutes in per day has done a lot for a lot of these kids (developmentally) possibly at the expense of learning progression.

I have no doubts that you are seeing changes now. Good job working with your son, hopefully you are getting what you need to help him.


Sent from my iPhone using Tapatalk
 

JDean3204

Well-Known Member
So today was the big day for our son, the ABA screening. A few months back, our doctor did formally diagnose him with Autism, level 2 according to his last observation of 6 months prior. I was pretty frustrated about that as it seemed a little pre mature to me.

But.. we found out today the reason for that is the Doctor realized we were really worried and wanted our son to have every opportunity to get help. ABA will only be covered by insurance if the diagnosis is official, if not it’s out of pocket and it isn’t cheap. So with that we have a year of medical coverage guaranteed for him including the ABA therapy. This also lessened the time significantly for us to wait for the ABA to start, we still waited a few months but that is mostly due to Covid.

The meeting was via Zoom, which again frustrated me at first. Once we started the meeting went as well as an observation meeting could go via a computer. They were pleased with the progress he is making, especially without any in person therapy since mid March. They think he is more towards the functional side (level 1) which we agree with.

His ABA will now be in person, up to 30 hours a week at the care center. We were told if he does well, they can remove the diagnosis after the first six months or year. Hoping for the best, but also prepared for that to not happen as well. Again if he’s happy and healthy, all is good.


Just thought I’d send the update, thanks again for all the replies and PM’s. Another great example of how this place can be a valuable resource when needed.
 
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