• Welcome to Autism Forums, a friendly forum to discuss Aspergers Syndrome, Autism, High Functioning Autism and related conditions.

    Your voice is missing! You will need to register to get access to the following site features:
    • Reply to discussions and create your own threads.
    • Our modern chat room. No add-ons or extensions required, just login and start chatting!
    • Private Member only forums for more serious discussions that you may wish to not have guests or search engines access to.
    • Your very own blog. Write about anything you like on your own individual blog.

    We hope to see you as a part of our community soon! Please also check us out @ https://www.twitter.com/aspiescentral

Brand New....

Kristenrn0415

New Member
Good morning.... I don't even know where to start.

My 16 year old son has had an ADHD diagnosis since he was 7. He's had a psychiatrist and various therapists since that time. He's been on many different medications since then. He has been on the receiving end of terrible bullying for most of his life and, in 7th grade, we had to pull him from the public school system because he was suicidal. He's been in online school since then.

Over the past four years I've noticed more and more that he is increasingly different from his same-age peers. I tried (for years) to convince his psychiatrist that he needed a new neuropsych profile but it took til two weeks ago to get him evaluated. The feedback appointment was three days ago and he was diagnosed with (word for word from the paper) "Autism Spectrum Disorder, Level 1, "requiring support", without accompanying language impairment, without accompanying intellectual impairment". He has a lot of social problems. He can't interpret what other people are feeling, can't see any perspective other than his own, HUGE reactions to big feelings, interests that are very unique and intense....it makes it so hard for him to make/keep friends. He has exactly one person he feels like he can talk to and who I would consider someone who is actually a friend. It's everything that is so typical of being on the spectrum.

We applied for medical assistance last month and were approved, but the psychiatrist filled out the forms and it reads that my son is permanently disabled. To me that means that he'll always need help and support. I don't mind that at all. It's just that label. Permanent. Disability. I hate hate hate the ableist terms. How about "differently abled"???

We (my husband and I) are trying to figure out where this goes from here. Having a new label to describe how he is doesn't change HOW he is. It's just a description of what we already knew. Right? But I don't know what to do or what standards I should be holding him to-- I think we've tried to hold him to neurotypical standards and that's been pretty unfair. I feel terrible about doing that....and I feel terrible for not pushing the re-evaluation harder for the past four or five years....I wonder if the difficult pregnancy factored into this, or if the prolonged labor, or the prolonged delivery. I have a lot of guilt about the "should haves".

We don't have the recommendations yet from the team that did the evaluation. In the meantime (the next few weeks), what on earth do I do???
 

Nitro

Admin/Immoral Turpitude
Staff member
Admin
V.I.P Member
welcome to af.png
 

Tom

Well-Known Member
V.I.P Member
I haven't looked into it recently, but when I checked into it a few years back I thought they (medical research) were moving away from connecting difficulties during delivery with autism. They weren't able to find correlation evidence. It doesn't mean it doesn't cause problems, just not those associated with autism which are currently mainly believed to be determined by genetics. (Which can be inherited or caused by environmental factors).
 

Outdated

Well-Known Member
V.I.P Member
....and it reads that my son is permanently disabled
Permanent. Disability. I hate hate hate the ableist terms. How about "differently abled"???
If you want ongoing medical support that term is the one you need. I needed the same to get my pension.

If it's not listed as a Disability then there is no support. If it is not listed as Permanent then you need to keep going back for reassessments every 3 months.

I personally feel offended when people call me disabled or disadvantaged, especially when their own abilities and achievements pale in comparison to mine, but for my government to list me as permanently disabled was a cause for celebration.

Horses for courses. :)
 

Kristenrn0415

New Member
If you want ongoing medical support that term is the one you need. I needed the same to get my pension.

If it's not listed as a Disability then there is no support. If it is not listed as Permanent then you need to keep going back for reassessments every 3 months.

I personally feel offended when people call me disabled or disadvantaged, especially when their own abilities and achievements pale in comparison to mine, but for my government to list me as permanently disabled was a cause for celebration.

Horses for courses. :)
We were just approved for medical assistance. And yes, I do understand that and I feel offended for everyone who is labeled that way. And yes yes-- when we got that label and we did celebrate because it gave us more resources for our son.
As a runner-- and not a GOOD runner-- I understand the "second place" comment but also, finishing a race when it's wildly difficult is also a win.
 

Outdated

Well-Known Member
V.I.P Member
Sorry but different aspects of this post kept dragging me back, issues from my own childhood demand of me that I try and save someone else from much of the heartbreak and stress that I suffered.

You’re quite correct that getting a diagnosis is not going to change how he is. That’s not what it’s for, having that label gives you the magic words you need in order for you to search and find the information you need in order To Change Yourself.

Nothing is ever going to change how your son is. You’ll find many mentions around the place that our condition is “hard wired”, it can not be altered. No amount of therapy, no amount of punishment or torture, nothing in this world will stop your son from being who he is. You will have already noticed that any attempts, no matter how subtle you think you’re being, cause him to dig his heels in and make him angry.

And you’ll find that many autistic people, myself included, like being the way we are and we think it’s the neurotypical people that are broken and disadvantaged. As for socialising, don’t worry too much. His hormones will start kicking in soon and that changes everything.

Once he no longer has to socialise with children in a school situation you’ll find that he is able to learn how to socialise without compromising his own sense of self. This is something you can not teach him, no one can, he’ll have to go out in the world and start learning his own way.

School was the most traumatic experience of my whole life, once I got out of school and in to the real world I had such a great time.
 

Suzanne

Well-Known Member
V.I.P Member
Professionals, what a laugh that is! Since they just go by the book and seem to not have any thoughts themselves.

I know someone who has a daughter who has ADHD and although there are similarities between her daughter and me, there are also marked differences and thus, even though ones are diagnosed with both, in fact, it can only be one of the other and your son CLEARLY is on the spectrum and does not have ADHD.
 

Outdated

Well-Known Member
V.I.P Member
....I wonder if the difficult pregnancy factored into this, or if the prolonged labor, or the prolonged delivery. I have a lot of guilt about the "should haves".
I forgot to mention - your guilt is completely undeserved.

We are not "brain damaged", our brains have physical differences to the typical but these differences are due to genetics. There is nothing you could have done during your pregnancy that could have "caused" this.

Your son is just different. You mentioned he has special interests, these are usually also related to special talents. Coax and encourage these in your son, give him a chance to find pride in himself and he'll probably end up making you proud as well.
 

Alexej

Well-Known Member
V.I.P Member
Hi and welcome @Kristenrn0415

Firstly I'm glad you have found this forum and have dived in - well done.
Secondly I am pleased that you have a diagnosis and that the psychiatrist has filled in the forms for permanently disabled. (I know it sounds hard, but as you have seen it opens many doors to you.)

Regarding your question on what to do, that depends a bit on where you live and therefore what support is available to you locally. Certainly use this forum and use the search function - its not bad, to educate yourself.
 

Aspychata

Serenity waves, beachy vibes
V.I.P Member
You son is so lucky to have such a caring mother as you. Please don't forgot yourself thru this journey. I did prioritize my daughter over my husband at times because these children sometimes need all of our support to move forward. If you have some goals for him down the line and plans for any type of emergency situation that arises will help with your peace of mind. My daughter did attend online and was able to transition to a performance arts high school. She did receive counseling which was so important for her.
 

Ken

Well-Known Member
V.I.P Member
Hi, and welcome to the forum.

First, I want to clear one thing up: Nothing you did or didn't do caused his autism. Autism is not a disease or something one can catch or something that has gone wrong. Autism is natural, it is genetic, it starts at conception and it is not a flaw.

I am now a 70 year old autistic and would like to say not to worry about your son. While life as an autistic is certainly not easy, he can still be successful and fulfilled. The primary difficulty is learning how to navigate a social society that he is blind to. I would not put any credence to the "permanently disabled" label. Indeed, he will permanently have social difficulties, but that does not mean "disabled". Difficult does not equal impossible or can't. It's only difficult.

Attached is a letter I wrote to give to friends and family members to help explain my autism. I hope it can help you.

As far as where to go or what to do, I wouldn't worry to much about that. It will all work out naturally even without a "plan" as long as you don't try to force him to "comply" with a world he can't perceive. I say this from my own personal experience. Sorry the letter is so long, but I feel that autism is a complicated subject and life with or as an autistic is so much better with understanding.

Regarding school; I also had a horrible time in school. I found, however, that how well I did depended on the teacher. I am socially blind. Being taught by a teacher is a social event. A class room is a social event. Teachers that do not make the teacher / student relationship such a social event was the most successful with me. It made the difference between A's and F's on the same subject.

I wish you and you son well and I feel you are already on the right path...
 

Attachments

  • What is Autism R12.pdf
    68.3 KB · Views: 16
Last edited:

Thinx

Well-Known Member
V.I.P Member
Hi and welcome. I think it's quite a fine balance for parents, where you want to help and protect them, but also they need to build strategies to manage and cope. So they need some space to do that. In days gone by, we didn't get recognised as high functioning autistic, so we had to sink or swim. Also we automatically developed some strategies and ways of coping. Not saying it was better, but there was an upside.

It's great that you have joined here, please do join in discussions and start your own threads as needed. Btw I don't think @Nitro means anything about autism in his byline, he's talking about racing, it's not a comment on your post. He is an admin here, and you may notice he has some resources listed that you can click on.
 

VictorR

Random Member
V.I.P Member
Welcome!

If you're into books, several that I like and recommend include



 

mysterionz

oh hamburgers!
V.I.P Member
Welcome. Am I the only one that has an existential crisis each night as to why I am autistic? Just me? Okay.
 

New Threads

Top Bottom