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Odd one out

P

PirateScientist

New Member
My child recently got an autism eval and they ha e Adrian. This was very much expected as I have it and my husband does but not everyone is on the same page on how to treat the child's diagnosis.

For some background, my child has a speech delay. They have made progress over nearly a year but we are still mostly doing non verbal communication and signs with them. We see a wonderful lady from Infant Toddler services who has helped everyone communicate and as a result progress has been made. We have very few tantrums and can understand what kiddo wants. Kid is also making more sounds everyday so talking could happen. However due to the recent diagnosis and having to keep them from other kids due to the pandemic ( no word on bivalent booster for their age group....I can go on a speech about that but long story short, no updated shot no daycare.

My next issue is ABA. I have been extremely hesitant on this. At first it was due to no shots being available and the risk of my child getting COVID ( I know all kids get sick but I work with it and my healthy grandmother died of it. One of my friends was in the hospital with it and nearly died. They also got Long COVID as a result.I also hear its nasty in kids. I wanted to do at home and everyone thought I was nuts( "You want someone in YOUR house for four hours????") We already do infant toddler at home (they are extremely careful and test beforehand and mask if needed. I do too and I feel that they take it seriously. I trust them. I don't trust a center to do so. While I was at work my husband and mother looked into ABA at home and realized I was right and applied to a center.

I decided to do some further reading on ABA and found some very disturbing results that have lead me to question if we should even consider it for my child. Not only was the binder the doctor sent us home with from Autism Speaks ( which was why I looked harder) but ABA has been said to be abusive, no better than dog training and that people ended up with PTSD from it. Even the new play based methods aren't exactly safe either. It's dog training for people and I'm certain I didn't have a dog.

My mother has been following this "Dr. Barbera" woman for months. Dr. Barbera is pro ABA and frankly I hate her. She comes off as an abelist shill who just wants to profit off of worried parents ( and dont get me started on chicken training with her). My mom does mini ABA with my kid and it's drills disguised as play. He also gets reinforces which is disgusting.

I looked up ESDM and I think it would be a better fit for my kid. It's tailored to his age group, child lead and just less intense. I still want to continue OT or get an SLP on board for speech. I tried telling all this and basically everyone said shut up and I was "holding my kid back.". I do want the best but what if the best isn't what it seems? I have gotten anxiety and a flare up of depression over this.

I apologize if I'm the asshole, a bad parent or just selfish. I need a vent and someone to listen....and I apologize for the rambling. It's early. Thank you.
 
My daughter stayed home growing up. When she was ready for high school, then she went to a performing arts school which was filled with other socially awkward students and did well. She performed on stage, and took regular classes. She is in her last semester at the university. She also has been working as a waitress. She recently was hired in a research position. Her early years l homeschooled, and later she went online for 6th grade on up. Truthfully, l gave her freedom, l really was a very relaxed mother, we never argued about anything. I try to provide many creative outlets for her, music lessons, gymnastics, Tai Quando, ballet, ice skating. Stick to what you feel is right in raising your child.
 
I am of the belief that a more "modern" or "progressive" approach to autism is to allow the individual to be him/herself without trying to "fix" anything. On one hand, I think this is a better approach to have in terms of the person's self-esteem and confidence if they can simply accept who they are,...and deal with it as best they can without people trying to change who they are. On the other hand, to over simplify things to suggest that autism is a type of "neurodiversity" is rather minimizing and inconsiderate for those individuals who suffer from some rather debilitating sensory and communication issues. Autism effects the brain from anatomical, physiological, psychological, psychiatric, gastrointestinal, neuromotor, and immunological perspectives,...there is a lot going on. It is a genetic, prenatal, developmental medical condition.

All of us, once we are self-aware, will find all sorts of things about our condition,...even subtle things that effect our daily lives. In those instances where we have specific things that are truly holding us back,...I believe there is a role for therapists. Often times, it is the process of "adapt and overcome", being mindful of the mind-body connection, how to find "healthy ways" of dealing with stress and anxieties, learning social and communication skills, or even "occupational therapies" so that we learn daily living activities that best suit our situations. Basically, I think therapies should be more focused upon the individual as a "good citizen", good social skills, and a productive member of society.

Historically, doctors and therapists have focused their attention on "fixing",...changing behaviors to fit the "norm",...with mixed success and failure. The problem is,...it sends a glaring negative message to the autistic individual,..."You must change in order to be accepted in society." If a person goes through life thinking that somehow they are "broken", then that sets them up for failure in life on many levels.

The other part,...is waiting for the younger generations of people,...the more socially progressive individuals to not only accept neurodiversity, but to use it in a positive manner to benefit society. We can't expect the older generations of folks to embrace this new paradigm.
 
If you have researched something you think will be suitable and right for your child, that's likely to be the way forward. Who are all these others and is there any reason you can't decide this for yourself? You are the parent.

I certainly agree that ABA is problematic. It aims to change behaviour, which could be aimed at something probably needed like potty training, but seems to have also focussed as children get older on making them seem more neurotypical, and in some cases therefore losing the diagnosis, which is seen as curing autism...

Research is now finding this does not improve outcomes for the children as they grow up. Presumably because they are now a person pretending to be normal, masking and feeling distressed or confused. There's an article here on a thread by @Duna and again on a thread by @LadyS about that.
 
Thinx said:
If you have researched something you think will be suitable and right for your child, that's likely to be the way forward. Who are all these others and is there any reason you can't decide this for yourself? You are the parent.

I certainly agree that ABA is problematic. It aims to change behaviour, which could be aimed at something probably needed like potty training, but seems to have also focussed as children get older on making them seem more neurotypical, and in some cases therefore losing the diagnosis, which is seen as curing autism...

Research is now finding this does not improve outcomes for the children as they grow up. Presumably because they are now a person pretending to be normal, masking and feeling distressed or confused. There's an article here on a thread by @Duna and again on a thread by @LadyS about that.
Click to expand...
I have my folks and my husband for ABA.
 
PirateScientist said:
I have my folks and my husband for ABA.
Click to expand...
You are the mom. You are responsible for your child being successful in this lifetime. You decide the course for this child. I never even had my child labeled. She has a big challenge just being a young adult. I provided a safe place for her to explore her special interests, and she didn't have to live by those annoying school bells decrying the start and stop of the school period. I never stressed her out over grade performance. My emphasis was on learning in a nurturing environment which homeschooling allows. I considered my responsibilities as raising a child that could make intelligent decisions on her own and hopefully be able to support herself as a young adult.
 
PirateScientist said:
My child recently got an autism eval and they ha e Adrian. This was very much expected as I have it and my husband does but not everyone is on the same page on how to treat the child's diagnosis.

For some background, my child has a speech delay. They have made progress over nearly a year but we are still mostly doing non verbal communication and signs with them. We see a wonderful lady from Infant Toddler services who has helped everyone communicate and as a result progress has been made. We have very few tantrums and can understand what kiddo wants. Kid is also making more sounds everyday so talking could happen. However due to the recent diagnosis and having to keep them from other kids due to the pandemic ( no word on bivalent booster for their age group....I can go on a speech about that but long story short, no updated shot no daycare.

My next issue is ABA. I have been extremely hesitant on this. At first it was due to no shots being available and the risk of my child getting COVID ( I know all kids get sick but I work with it and my healthy grandmother died of it. One of my friends was in the hospital with it and nearly died. They also got Long COVID as a result.I also hear its nasty in kids. I wanted to do at home and everyone thought I was nuts( "You want someone in YOUR house for four hours????") We already do infant toddler at home (they are extremely careful and test beforehand and mask if needed. I do too and I feel that they take it seriously. I trust them. I don't trust a center to do so. While I was at work my husband and mother looked into ABA at home and realized I was right and applied to a center.

I decided to do some further reading on ABA and found some very disturbing results that have lead me to question if we should even consider it for my child. Not only was the binder the doctor sent us home with from Autism Speaks ( which was why I looked harder) but ABA has been said to be abusive, no better than dog training and that people ended up with PTSD from it. Even the new play based methods aren't exactly safe either. It's dog training for people and I'm certain I didn't have a dog.

My mother has been following this "Dr. Barbera" woman for months. Dr. Barbera is pro ABA and frankly I hate her. She comes off as an abelist shill who just wants to profit off of worried parents ( and dont get me started on chicken training with her). My mom does mini ABA with my kid and it's drills disguised as play. He also gets reinforces which is disgusting.

I looked up ESDM and I think it would be a better fit for my kid. It's tailored to his age group, child lead and just less intense. I still want to continue OT or get an SLP on board for speech. I tried telling all this and basically everyone said shut up and I was "holding my kid back.". I do want the best but what if the best isn't what it seems? I have gotten anxiety and a flare up of depression over this.

I apologize if I'm the asshole, a bad parent or just selfish. I need a vent and someone to listen....and I apologize for the rambling. It's early. Thank you.
Click to expand...
Welcome. You will find a lot of useful help and advice here. ABA has been discussed here many times, and the consensus seems to be against it. It is really just forcing a person to be someone they are not, and is often times traumatic. "Dog training" is a fairly complimentary description. "Torture into submission" also seems to apply. You will read a lot here about masking, when we pretend to be normal. ABA is really a form of forced masking.

I have had EMDR for trauma treatment. For me, it mitigated the effects of childhood trauma, and gave me some control over it. Traumatic mequences would intrude at inopportune times. After EMDR, they were under control, and did not come up unless I desired. I call that a win. I do not really see EMDR as an autism treatment, except as a way to mitigate the effects of ABA treatment.

It seems to me that many of the advocates for ABA have the philosophy that autism is a disease that needs to be cured. Most here don't see it that way.
 
I'm not going to hate on ABA. It isn't the same nasty ABA today that we had 30 years ago. I'm not going to praise it either.

Up front, autism cannot be cured. Anyone who tries to sell you that snake oil is despicable. But the autistic person does need to interface with society. The quality of that experience can be improved. Unfortunately, it isn't society that will modify itself. It is the autistic individual who will have to figure out how to make the interface work.

A lot of the child-rearing techniques for NT children are "dog whistle" techniques. You do them because they work. There are some things a child absolutely must do if they are to have any independent life at all. And must NOT do if you don't want them to get run over by a truck or otherwise dead. There are some essential behaviors where there's no reason to for a child to want to learn if there's no obvious reward.

You try to avoid negative reinforcement, but a child is going to run into a lot of that on their own anyhow. An occasional stern talking to may work on NTs but has less utility for significantly autistic children. They will vapor lock, and nothing you are trying to say to them will get thru. The positive reinforcement for a behavior now is trying to help the child avoid negative reinforcement in the future for an alternative behavior.

But ABA is probably not a good fit for anything beyond personal hygiene, basic communication skills, and survival. Or for ASD-1 kids. It shouldn't be used on autistic traits that are ultimately harmless. (Maybe they would have tried teaching me to want to keep my clothes on. Being immersed in Puritan Christianity sure didn't work.)

An interesting discussion of the controversy:

https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/
 
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Our children do have to interact but in the end, they are going to mask, something we learn to do. All of society masks to some extent, it's just that it's our go-to for almost all situations. Because if we follow a prescribed set of behaviors, we then can anticipate the outcome, and feel comfortable.
 
Quick update, was able to talk to husband about this and he did listen to what I had to say which is progress. We agreed that additional speech/ additional OT would not be a bad idea foe our kid. We decided to discuss that with infant toddler when they are here next. Thank you
 
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