Autism- what now | Imamother

amother

Powderblue

Wed, Sep 13 2017, 10:44 am

My elementary aged son was just diagnosed with autism. I'm not surprised at the diagnosis- it's a suspicion I've had for a while, but I'm surprised at how unsettled I feel. I'm also confused about what to do next. What kind of treatment will he need? Where can I get that for him? Also is there a benefit to telling people and how would I do that (family meeting seems way to dramatic...)
Some background on my son: we live in ny. He is cute smart average seeming kid. Most of his social awkwardness/ inappropriateness is excused because he's still young. He's in a mainstream Yeshiva. He gets therapy and is successful academically but struggles socially.
I'd love any advice or suggestions

amother

Pearl

Wed, Sep 13 2017, 1:23 pm

Hi. Even when you know and suspect it, it is still such a shock to the system. I would have been surprised if you (or anyone) did not feel unsettled! I'm not really in a position to advise you about therapies etc etc because I don't live in your area.

But I wanted to say this. In a way, nothing has changed. Your son is just as he was, made absolutely perfect by Hashem to fill HIS UNIQUE TAFKID in life. Part of that tafkid involved BEING YOUR SON to help YOU grow in amazing ways that you don't even know about yet.

The word "autism" is just a word , a HUMANly applied label that will help you understand him better, and help you get services to help him. Nothing more. You do not have to tell anyone anything yet. Let yourselves get used to it all first.

amother

Emerald

Wed, Sep 13 2017, 3:31 pm

As someone who has been in the field of special education for a long time, I have become more and more disgusted with these labels. Neuro developmental disorders are defined purely on a behavioral basis for the convenience of doctors and insurance companies. This is a huge disservice to literally a generation of children.
I have discovered that there is a world of information when you look at these disorders holistically. Many of these children have so many underlying issues, including immune dysfunction, gut dysbiosis, heavy metal toxicity. But they are simply put into a box and put on the services train to keep treating the symptoms rather than addressing any of the root internal conditions that are greatly contributing to the dysfunction.
This is the Internet age. Functional medicine is booming. I strongly encourage you to get on that bandwagon.
Marcella piper Terry had a series on you tube called "Autism is treatable".
I am not trying to offend or debate anyone but it is so important to look at the environmental contributing factors. There is no such thing as a genetic epidemc. And this is an epidemic in our times.
Hatzlocha
Hashem should light the way

amother

Ecru

Wed, Sep 13 2017, 4:17 pm

amother wrote:

The word "autism" is just a word , a HUMANly applied label that will help you understand him better, and help you get services to help him. Nothing more. You do not have to tell anyone anything yet. Let yourselves get used to it all first.

Exactly this.

Use the diagnosis to get as many services as you can. In that way it will be very helpful to you to have gotten this label for your child.
There's no reason to tell anyone, including family. Your son will benefit from having friends and family members treat him like a regular kid, maybe one who's a little quirky. Many of them might not know what to do with the diagnosis if you spell it out for them, and can do more harm than good. That neighbor who loves sending her kids over to play in your yard might change her mind about that. Your mother or mil or well meaning great aunt might start offering all kinds of brilliant suggestions. Give yourself some time. With some good intervention it might become less and less important to share this label with everyone.

amother

Goldenrod

Wed, Sep 13 2017, 4:47 pm

amother wrote:

This is exactly what I was going to post. I'm in special education too. The therapies available out there are so, so limited. Lots of diagnoses, very little effective mainstream treatment. I just finished reading this book and it completely changed the way I look at at neuro-developmental disorders. For personal reasons I also started researching all kinds integrative, functional and biomedical approaches to treating neurological symptoms and there is a ton of information out there. It's sad that there isn't more awareness regarding the biomedical root causes behind autism spectrum disorders. OP my advice is to start digging. A DAN or MAPS doctor can help you. Good luck!!

https://www.amazon.com/Healing.....emics

rydys

Wed, Sep 13 2017, 6:02 pm

amother wrote:

I totally agree with this. When I was given the diagnosis from a psychiatrist, my reaction was "great!". She was shocked at it. I told her that I know my child, nothing you say or label will change who he is. However, I need to get services and this is simply the key to get those services in place.

Never lose sight of who your son is. He is still your yummy, delicious, adorable little boy. He happens to have some issues that need to be dealt with, and now you were given a focus and way to help him with them. Every kid has issues, some more significant and difficult to deal with than others, but now use the diagnosis as a tool to help him overcome them.

seeker

Wed, Sep 13 2017, 8:30 pm

rydys wrote:

What she said!

Yes, receiving a diagnosis causes all kinds of feelings. But just remember that your child is the same person they were before the diagnosis. All that changed is that you have a new language with which to access services and support.

Don't share the diagnosis with anyone that doesn't need to know. Share with therapists etc but if he is indeed an average-seeming child then the label is very unlikely to help anything.

cuties' mom

Thu, Sep 14 2017, 5:35 am

I don't know if you're interested, but your insurance should cover ABA if you want to go that route, but it's up to you. Also, whatever services you ask the DOE for, will probably be given because of the diagnosis. You know your child best, so you know what he needs. For example, my asd kid gets individual speech 5 times a week, group speech twice a week, and OT 5 times a week, plus he has a crisis para. We were originally offered speech, OT, PT and counseling 2-3 times a week, but since ds can get anywhere in my house without his feet touching the floor, I see no need for PT, and since ds isn't verbal, I see no need for counseling, so I requested extra speech and OT instead. Think about what your child needs before his next IEP meeting, so you could get the correct services. Other than the extra services, your ds is still the same amazing kid he was before the diagnosis.

amother

Aquamarine

Thu, Sep 14 2017, 5:42 am

I have one kid who was diagnosed as being on the spectrum. I think the extra help he received made a huge difference. I have another kid who was never diagnosed - only recently it was suggested she might have this, and she could probably really have benefited. (mostly with social skills help)

My "autistic" child is one of my sweetest, kindest, most helpful children. I am not too worried about him. He had no academic problems, just social ones.

I think it is just ridiculous that he has the same label as a kid who needs full time care.

amother

Pearl

Thu, Sep 14 2017, 5:58 am

All you amothers who are talking about treating the "cause", can you explain more about how and what you mean?

To me autism is a "diffability" which needs understanding and support. But we all have challenges on life.

How do you think it can be cured? Wouldn't " curing " a person's autism (of it were possible) take away a part of the person's essential self?

rydys

Thu, Sep 14 2017, 8:19 am

I don't think autism can be "cured". However, it can be "managed". People with autism (which is a huge spectrum, from completely disabled to a little socially "off") relate to the world and other people differently than the "mainstream". Most of these issues relate to communication--speech, affect, mannerisms, feelings, etc. These skills can be trained to different degrees in each person so that they can learn the "normal" way of interacting with the world.

ABA, speech therapy, social skills therapy and other therapies work on these skills. They can help maximize the person's ability to interact with others and function in regular society. For some the differences are so severe that the most that can be done is keep them safe and happy. For some, they can get them close to "mainstream", sometimes to the degree that others don't really notice them. This does not mean they are "cured," and most still need some support for life. However, many can lead regular lives, get married, have families, hold down good jobs, etc.

Learning to interact with the mainstream does not change the person's essential self. He will maintain his personal interests and underlying personality but will learn how to use those in a more mainstream way. An easygoing person will stay easygoing and a stubborn person will remain stubborn but each will learn how to mediate those traits in the mainstream world.

seeker

Thu, Sep 14 2017, 8:24 am

I don't know about others, but when I talk about a "cause" as opposed to symptoms, what I'm thinking is that people are grouped by symptoms while there may actually be different things triggering the symptoms in different people. Maybe for some it's more sensory, for some it's just a neurological profile, and for some it's digestive or nutritional malfunctions that are interfering with brain processes. But in "official" channels, not a lot of attention is paid to these possibilities. They're very busy with therapies that treat the symptoms, to the exclusion of all else. Now, there is good reason for this - the symptom therapies are more widely and observably effective. But that doesn't mean we shouldn't also look for other potential avenues. And if these things could indeed be "cured," then no, I don't think it takes away any part of a person's essence. Ideally, it would help the person's essence shine through more easily. Autism is used to describe a set of difficulties. If a person has special talents or intelligence, or unique perspectives on life, I don't see any reason why alleviating the difficulties would make those go away.

amother

Emerald

Thu, Sep 14 2017, 8:54 am

The point is that if you seek a professional who cares to take a look at the individual they will often find systemic issues of toxicity and inflammation which are damaging the neurological system. An integrative doctor would look at what is specifically going on with the child on a case by case basis, rather than sticking him in a box with a neat label. I strongly advocate that people seek this kind of help.
As for accepting people for "who they are"
I see so many kids struggle with everything from simple transitioning, processing language, social cues, sensory issues. I feel like in the therapies we try to teach kids to walk uphill. And for sure they can learn strategies and coping mechanisms. But why not level the ground so that they don't have to be as triggered and reactive ( or dulled on the other extreme)? U are not squelching their personality rather you are allowing it to unfold by creating an internal environment for them to thrive.

amother

Pearl

Thu, Sep 14 2017, 8:25 pm

amother wrote:

To those of you who say it's ok not to tell anyone about the diagnosis, how do you get services for your child? Don't you have to tell? Who are you getting the services from?
Thanks!

Of course you discuss it with professionals who understand the "A" word. But not with Aunty Beryl or Shmulik's mother who will just judge you and your child.

(no offense to anyone called Beryl or who named their kid Shmulik)