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22Phoenix22
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13 May 2021, 9:19 am

To starkid: I don't remember how much I paid. I didn't have any choice but to go with the online assessment though, as much as I wanted to go in person. She did need me to turn my camera on to observe me (I was reluctant at first but saw the reasoning behind it). There's just nobody even a few hours away. I only found people who looked explicitly at kids, and when I reached out, they wouldn't take me. I didn't take any tests with cognitive functioning, as far as I'm aware.



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13 May 2021, 12:30 pm

kraftiekortie wrote:
Aspergers is still used in the vernacular...and it is within the ICD-10 as well.

I’m not Aspergers because I had a speech delay.
That's consistent with my understanding, the old way to distinguish Aspergers from Autism was speech delay. Then in 2013 DSM-5 just glopped together a bunch of maybe-related diagnoses as Autism Spectrum Disorder. I tended to assume they did this because they realized they didn't understand the various syndromes well enough to get too detailed. But I suppose another factor could be that as older folk went in for diagnosis it might often be impossible to determine whether there had been an early speech delay. (I was fortunate. Even though I was diagnosed at age 64 it was possible to determine I did not have an early speech delay, so my diagnosis included both Autism Spectrum Disorder and "what was previously known as Asperger's Syndrome".)


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13 May 2021, 4:51 pm

IsabellaLinton wrote:
Did you pay for the online assessment? What were the doctor's credentials?

If she has accreditation for autism assessments, and those credentials are accepted where you live, it should be fine. Normally the proper credentials will be a PsychD or PhD psychologist / neuropsychologist, as opposed to being a psychiatrist. Sometimes a Masters in Psychology is recognised, depending where you live.

I've heard of some therapists charging an additional fee for the written report, so perhaps yours was optional and you can still request it? Either way I recommend that you contact the doctor again, and ask for a written summary / report of the testing along with your diagnosis.

I was tested in person during one marathon session about ten + hours, and then I did some more questionnaires from home online. Then I had to go back for the "followup" and to receive my report. At the end of that long day she didn't tell me her clinical opinion so I nervously asked, "Do you think I might have Aspergers?" I didn't think she would tell me until the day I received my report, but she said "No you definitely don't have Aspergers". I thought that meant that I didn't have "anything", but she clarified by saying I was autistic. I said, "Oh -- so you mean High Functioning Autism? Isn't that the same as Aspergers? You said I'm not Aspergers so I'm confused ..." The doctor told me that Aspergers and High Functioning / Level 1 Autism are NOT the same thing, and that I wasn't either one of them. (I'm Level 2 Autism without an intellectual disability).

My point is that according to her, Aspergers is NOT the same as High Functioning Autism, although I'm not completely sure what the differences are because neither one applied to me at Level 2.

From my research on Autism I know that IQ has nothing to do with a person's functional level or their level of support. A person can be Level 2 or 3 Autism and still be highly intelligent. Or they can be Aspergers / HFA and have a learning disability.

Anyway, I'm rambling - I'd definitely contact her again and ask for something in writing. Then at least you know her formal diagnosis and you can decide what to do next.

Hugs!


I'm level 2 without intellectual disability also.



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13 May 2021, 5:06 pm

Asperger's is usually a form of "high-functioning" autism. It is considered part of the "autistic spectrum." People who would have been Asperger's are now usually diagnosed with "Autism Spectrum Disorder, Level One, No Speech Delay and No Intellectual Disability." I don't say "always," I say "usually."

Not all "high-functioning" people would have been diagnosed with Asperger's under the DSM-IV, or ICD-10. Some of them would have been diagnosed with "Autistic Disorder" under the DSM-IV and ICD-10.



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13 May 2021, 6:51 pm

My ADOS report gave me a score of 3(classical autism level) for social communication &5(Asperger's level) for social interaction. Hence I was given an ICD 10 Asperger's dx. My pdoc just puts ASD on any letters that are sent to me. I have diagnoses of ASD and schizophrenia with dyspraxia being a highly probable(mentioned a number of times), but never officially diagnosed, addition to those.

It's hard to say what support needs are due to the ASD and what's due to the schizophrenia. Either way I'm not a 'high flier' or a 'In need of 24x7 care & support' type. I don't care whether ASD or Asperger's is used. I'll quite often use both in the space of a post.


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13 May 2021, 7:01 pm

firemonkey wrote:
Either way I'm not a 'high flier' or a 'In need of 24x7 care & support' type.


I feel like I'm not high support either, despite the fact my report says I need "significant" and "substantial" support, etc. It's not like I have a full-time caregiver or anything. But then I realise I'm comparing myself to my own norms if that makes sense. I'm so used to being myself that I don't notice how far I am from mainstream society. Rather than having a full-time caregiver I just don't take care of myself. I'll avoid things entirely and shut myself indoors as a recluse, avoiding people, places, things, sensory input, and experiences that overwhelm me. I let my self-care go and I don't ask for help appropriately. In fact I almost never ask for help. That doesn't mean I'm successful. It means I'm hiding in my house terrified of life and unable to cope with the simplest outings. I'm still overwhelmed and shut down from going to the hospital for a Covid test on Saturday. Round trip = maybe 90 minutes. I'm still recovering from the mental and sensory effort of being in society that brief bit of time.

I sense you're kind of the same way. You don't think you have high needs, but you compensate by living a highly controlled life and relying on the assistance of your stepdaughter for complex tasks. I rely on my daughter for a lot of support and in many ways she parents me more than I parent her. I also have regular sessions with psychology, neuropsychiatry, social work, and occupational therapy for executive function and sensory issues. I forget that this counts as "support", and without it I'd be totally lost the way I was last summer - batshit crazy and unable to cope with daily life.



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13 May 2021, 7:20 pm

IsabellaLinton wrote:
I feel like I'm not high support either, despite the fact my report says I need "significant" and "substantial" support, etc. It's not like I have a full-time caregiver or anything. But then I realise I'm comparing myself to my own norms if that makes sense.


The Australian government has introduced a National Disability Insurance scheme (NDIS) and to be eligible for funding support you need to demonstrate that significant support is required.

Despite the fact all the diagnostic paperwork says my daughter requires "high support" and that she has "significant impairment" she has been knocked back now 3 times for any financial assistance because she is considered too high functioning and (according to them) she requires no supports.

This demonstrates two things
1. diagnostic criteria applied to small children are not valid because even the government recognises that people can overcome functional impairment (hence why they ignored her diagnosis of classic autism)
2. The criteria for who is "high functioning" appears to be highly subjective (and in this instance its very frustrating). I would have thought the person who was applying for financial assistance would know best if they need support.



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13 May 2021, 7:36 pm

I'm sorry to hear that. I totally agree with you that it's a problem. I don't know how old your daughter is, but she lives in your home where you provide food, shelter, and structure. That's a support and I'm sure she can't be self-sufficient, not just because of her age but because of her developmental needs.

My daughter is now 24 and considered High Functioning but there's absolutely NO WAY she is able to live on her own. She tried moving out for Uni and lasted one night before quitting school and basically having a nervous breakdown for the next six months. Even if she were a millionaire she doesn't have the coping skills to live on her own or manage day to day without me. We had the same run-around getting her on disability benefits even though she has a permanent physical disability as well. Actually two of them. It took almost two years and a full tribunal for her to win disability support but even that's not enough to live on, if she were capable of living on her own - which she isn't.



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13 May 2021, 8:02 pm

IsabellaLinton wrote:
firemonkey wrote:
I sense you're kind of the same way. You don't think you have high needs, but you compensate by living a highly controlled life and relying on the assistance of your stepdaughter for complex tasks. I rely on my daughter for a lot of support and in many ways she parents me more than I parent her. I also have regular sessions with psychology, neuropsychiatry, social work, and occupational therapy for executive function and sensory issues. I forget that this counts as "support", and without it I'd be totally lost the way I was last summer - batshit crazy and unable to cope with daily life.


You're very insightful and observant. I live a rather basic lifestyle, and am more than a little avoidant. As my stepdaughter said at my recent care act assessment; I'm not good when it comes to daily practical/technical matters.

Living in Essex I was the typical non acute, middle aged person with severe mental illness that gets pushed to the back of the queue re help and support. I was self neglecting. My stepdaughter would do her best when she visited, but that was a couple of times a year as she lived about 3 hours away. She tried for years to get me to move but I was too anxious to say 'yes' .

The thing that swung it round to agreeing to move was notification they were planning to knock down my block of flats. I'm still living a rather basic lifestyle but I'm not self neglecting like I was in Essex. Downsizing when I moved was sensible. My old place was fit most of the time to be filmed for a 'dirtiest homes in the UK' type programme. Plus it was very untidy. Now I'm still not a very tidy person , but it's confined to a much smaller area

I went into avoidant mode re cleaning because I got overwhelmed thinking about the process of doing so. My two main EF difficulties are organising and planning. I'm not that good when it comes to multi-step tasks.

One of the hardest things over the years has been the negativity due to the fact I'm expected to perform as well when it comes to practical matters as I do when verbal skills are most needed . My stepdaughter has been one of the few people to notice that there is a big gap ability wise between them.


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13 May 2021, 8:03 pm

IsabellaLinton wrote:
I'm sorry to hear that. I totally agree with you that it's a problem. I don't know how old your daughter is, but she lives in your home where you provide food, shelter, and structure. That's a support and I'm sure she can't be self-sufficient, not just because of her age but because of her developmental needs. .


She's 15 and will be turning 16 later in the year. She's become independent and uses public transport/walks to school and goes to school camps, goes to shop and knows how to use a credit card and does a lot of things independently. But she's also a typical teenager and never cleans her room and lately shirking chores. Her biggest problem at the moment is her social skills. She hangs out with boys at lunchtime and recess and plays sport with them. The girls hate her and bully her at any opportunity. Where the funding would help is with online programs like "teen talk" where girls get together online to make friends. Also speech therapy to help her deal with social speech. At the moment I pay for these out of my pocket.

IsabellaLinton wrote:
IMy daughter is now 24 and considered High Functioning but there's absolutely NO WAY she is able to live on her own. She tried moving out for Uni and lasted one night before quitting school and basically having a nervous breakdown for the next six months. Even if she were a millionaire she doesn't have the coping skills to live on her own or manage day to day without me. We had the same run-around getting her on disability benefits even though she has a permanent physical disability as well. Actually two of them. It took almost two years and a full tribunal for her to win disability support but even that's not enough to live on, if she were capable of living on her own - which she isn't.


I really admire the Aspie parents on WP for being such dedicated parents. I am sure while you are around your daughter will be well looked after. None of us signed up for this but we love our children and will do anything for them.

My concern is when my wife and I aren't around anymore, I hope our children will find a safe place to stay.



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13 May 2021, 8:23 pm

firemonkey wrote:
One of the hardest things over the years has been the negativity due to the fact I'm expected to perform as well when it comes to practical matters as I do when verbal skills are most needed . My stepdaughter has been one of the few people to notice that there is a big gap ability wise between them.


I hear you. I know you're extremely bright with a Mensa IQ. Autism is diagnosed in part by this spiky profile, and because our verbal intelligence is so much higher than our practical. Unfortunately this puts us at a disadvantage because we aren't taken seriously by ableists who assume we're too smart to need help. Sometimes it's easy to believe them and blame ourselves like we should know better, do better, be better, or have more skills. Self-doubt is really common for autistics because we can think or rationalise very well, allowing us to deconstruct the problems and lay blame on ourselves for an inability to solve them.

I feel very stressed at times for the same reasons you do. I'm smart and I sound very insightful about a lot of topics. That leads to prejudice whereas people assume I don't need help, or I must be "high functioning" (God, I hate that term -- it does us all such a disservice). People online would be surprised to meet me in real life because I'm not witty or funny or competent. I'm likely hiding in my pillowfort afraid to look out the window, or make a phone call. I'd be mute and stimming like a baby. Then people get upset thinking I'm not living up to my potential, or showing confidence, or being "my real self" or whatever new age catch-phrase they can find. The problem is that I am my real self. It's taken years for me to be authentic and stop masking. I guess that's just not good enough for others, because it makes them uncomfortable. You can guess what I think of that mentality.

Sorry for the rant. I'm feeling ranty tonight about a number of issues.

You're very lucky that your stepdaughter has been such a responsible and caring support through the years. It sounds like you wouldn't have received your ASD assessment without her advocacy and concern, and I know she plays a huge role in your life. EF and adaptation sound like serious issues for you. Have you ever tried OT? I know I probably sound like a broken record recommending OT to people, but I've found it very helpful. EF is still a big challenge for me but I've made some headway in the past year, just taking baby steps.



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13 May 2021, 8:27 pm

Another thread asked about the *DSM* definitions for Autism and Asperger's.

I found the two definitions (one for Asperger's from the DSM-IV and one for Autism in the DSM-V) and posted them here:

viewtopic.php?f=3&t=396746&hilit=DSM&start=16

When the question is "how does the DSM define Asperger's" the answer is one that is not very hard to agree upon. Get a copy of the DSM (from the library or a book store for instance) and look at - it says what it says.

"Asperger's or Autism" is a more complicated question.

As far as the DSM is concerned Asperger's is just another name for a specific variety of Autism. But not every one will agree to that definition. Since there is no blood test for either Asperger's or ASD, and frankly there are no specific well recognized bio-markers (things like spinal tap looking for specific proteins) AT THIS TIME - the definition of what is Asperger's and what is not will necessarily have some variation and be - to a certain extent - in the eye of the beholder.

If the question is "do I have a diagnosis of Asperger's" the answer is quite simple - whatever the professional said is your diagnosis. If you have it in writing that makes things easier - you and other people can both look at the same piece of paper and see the same thing. If all you have is a verbal diagnosis that makes things a bit harder - but it is still a diagnosis.

A doctor told my father he thought he had Parkinson's. Therefore my father had a diagnosis of Parkinson's. I did some research and discovered that the University of Pennsylvania had a new experimental procedure for identifying special proteins which can form clumps called "lewy bodies". The name of the protein is alpha-synuclein. We mare an appointment with the HUP (the Hospital of the University of Pennsylvania) and went down to their cutting edge center. The young doctor there asked my father a number of questions. He asked my father to walk and watched carefully how his feet and legs moved, and how his arm moved. I asked the doctor about bio-markers. He said they had a new machine called a DAT scan which measured the dopamine levels in the brain - and that would tell for sure. He wrote a script and we had to return a different day for the DAT scan. I did some research and discovered that the machine did NOT measure the dopamine in the brain, but measured the number of dopamine receptors - the patient was given a special substance which was very like dopamine and binded to the dopamine receptors and was radioactive so it showed up well on film sensitive to radioactive energy. (I am being a bit sloppy in my terminology - but the basics are correct). A "Normal" patient's DAT scan would look one way, and a Parkinson's would look another. The alpha-synuclein test was still "in the lab" only.
The DAT scan came back and it looked like neither the "Normal" NOR the "Parkinson's" scan - it was someplace in between.
The Doc consulted with another doc and finally said he didn't think it was Parkinson's. So now he had two diagnoses one said "Parkinson's" and the other said "not Parkinson's" - the the question remained - did my dad, in fact, "have Parkinson's"?
The answer is "we just don't know". And for Parkinson's there ARE bio-markers (DAT scan and alpha-syn Lewy Bodies).
The question is: what IS Parkinson's? Is it the hand tremor? Is it the strange way of walking (called "gate")? Is it Lewy Bodies? Is it low dopamine or dopamine receptors? Is it the kind of dementia that is progressive? Yes and no. The alpha-syn proteins are malformed version of normal proteins, they are "folded" is an odd way that can cause other similar proteins to also become incorrectly "folded" - that is they have the same parts - the same numbers of atoms of the exact same elements connected in the exact same order - but the 3d geometry is different. mad cow disease is the same way. It isn't a bacteria, nor a one celled organism, nor a virus, but it is a protein that can reproduce. And when it does it clumps up making the Lewy Bodys. And this slowly kills the part of the brain that makes dopamine - and it is progressive. And that results in the hand tremor and the odd gate and the dementia and - eventually - death. But what causes the proteins to get misfolded in the first palace? And how can you tell the difference between the tremor and the gate caused by Parkinson's and a tremor and odd gate caused by something else? Like hypochondria? And what if there was a toxin which killed off some of the brain's dopamine cells causing the same gate and tremor - but there are no alpha-syn proteins and no progressive decline.
Is the cause of the initial malformed alpha-syn proteins genetic? Or is it environmental? Or a little of both? And what is the exact state of "this patient" - of "my father". The answer to all of these questions is "there is a lot we don't know".

So doctors guess. They make the best guess they can using all the information they have. And they are wrong sometimes. And even when they are right - they cannot always "fix it".

The same thing is true with Asperger's and Autism. The doctors are guessing. They are making educated guesses - some more educated than others - they are bringing their own personal biases into the process - they may think they are right - or they may just want you to think they are right - because who wants to be a doctor who says "I don't know" a lot. Some are better guessers than others. Some are better informed than others. Some are well meaning but just wrong. Some are right. Even when they are right sometimes they cannot "fix it".

You will even find people who want to say "nothing to fix - not better or worse just different". Some people really want to get fixed. If you are the parent of a child who is non-verbal and / or self-harms you may want something to "fix it" very much. I personally am in the camp that it is a "blessing . . . and a curse".

Any way.
This how it looks to me at this time.

I am sorry this post is so long - I didn't have time to make it shorter.


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13 May 2021, 8:40 pm

cyberdad wrote:

She's 15 and will be turning 16 later in the year. She's become independent and uses public transport/walks to school and goes to school camps, goes to shop and knows how to use a credit card and does a lot of things independently. But she's also a typical teenager and never cleans her room and lately shirking chores. Her biggest problem at the moment is her social skills. She hangs out with boys at lunchtime and recess and plays sport with them. The girls hate her and bully her at any opportunity. Where the funding would help is with online programs like "teen talk" where girls get together online to make friends. Also speech therapy to help her deal with social speech. At the moment I pay for these out of my pocket.


That's really frustrating. She definitely needs social support especially as she gets a little older and graduates. There comes a point when demand exceeds our capacity. Right now she's fairly safe in her family bubble but it's still important for her to develop personal responsibility and social skills. She'll need flatmates (presumably female) to go off to Uni or to live away from home. Does her school offer any type of transition services, teaching teens how to "adult" or transition into the next stage of their lives after high school? It sounds like they don't. :( I'm sure the bullying isn't taken seriously either, despite these mean girls being so cruel.

I did speech therapy as a child for mutism and pronunciation, and again after a stroke six years ago, but I'm having a hard time finding Speech-Language Pathology now. Psychology tells me to look for SLP. Potential SLP providers tell me it's a Psychology issue. It's a vicious circle and I'm sinking more and more into silence. I'm not sure why your daughter attends SLP but it's obviously needed, and it shouldn't cost you money out of pocket. I thought Australia had "free" healthcare? Or is the expense because it's paramedical?

cyberdad wrote:
I really admire the Aspie parents on WP for being such dedicated parents. I am sure while you are around your daughter will be well looked after. None of us signed up for this but we love our children and will do anything for them.

My concern is when my wife and I aren't around anymore, I hope our children will find a safe place to stay.


Thanks. Sadly her father is a douchebag deadbeat who left when she was six months old, and then actually disowned her, after suing her in court. So I can't say that all parents love or support their kids. But, that's another rant.

Re: Your daughter's messiness etc. Has she been tested for ADHD? Maybe that diagnosis would afford her some new supports?



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13 May 2021, 9:12 pm

IsabellaLinton wrote:

Sorry for the rant. I'm feeling ranty tonight about a number of issues.

You're very lucky that your stepdaughter has been such a responsible and caring support through the years. It sounds like you wouldn't have received your ASD assessment without her advocacy and concern, and I know she plays a huge role in your life. EF and adaptation sound like serious issues for you. Have you ever tried OT? I know I probably sound like a broken record recommending OT to people, but I've found it very helpful. EF is still a big challenge for me but I've made some headway in the past year, just taking baby steps.


If the ranting helps then rant. I totally agree that without my stepdaughter's support an ASD assessment would not have happened. Even though my pdoc here in Wiltshire is a class above the previous ones I've had. It's a sad fact of life that without family in your corner, advocating for you, it's an uphill struggle, as a middle aged non acute person with SMI, to get the help and support you deserve and need.

'Care in the community' is theoretically a good thing but has been seriously hampered for decades by major underfunding. Going alongside that has been the deterioration in social care provision .

The situation in the USA is not exactly great either. Many of those who previously would've been in psych hospitals are now in prison . Then there are the homeless with severe mental illness. The closing down of large psychiatric hospitals in both the UK and the USA should have been accompanied by decent levels of funding for care in the community. Successive governments, both on the left and right, in the UK and USA, have failed to provide that.

The situation for autistic adults in the UK is highly inadequate too. The message that comes across is there is a belief that autism magically ceases to cause difficulties when a person becomes an adult. Post diagnosis there is little to no support for the late diagnosed adult.


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Your neurodiverse (Aspie) score: 133 of 200
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You are very likely neurodiverse (Aspie)


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13 May 2021, 10:28 pm

IsabellaLinton wrote:
That's really frustrating. She definitely needs social support especially as she gets a little older and graduates. There comes a point when demand exceeds our capacity. Right now she's fairly safe in her family bubble but it's still important for her to develop personal responsibility and social skills. She'll need flatmates (presumably female) to go off to Uni or to live away from home. Does her school offer any type of transition services, teaching teens how to "adult" or transition into the next stage of their lives after high school? It sounds like they don't. :( I'm sure the bullying isn't taken seriously either, despite these mean girls being so cruel.

I did speech therapy as a child for mutism and pronunciation, and again after a stroke six years ago, but I'm having a hard time finding Speech-Language Pathology now. Psychology tells me to look for SLP. Potential SLP providers tell me it's a Psychology issue. It's a vicious circle and I'm sinking more and more into silence. I'm not sure why your daughter attends SLP but it's obviously needed, and it shouldn't cost you money out of pocket. I thought Australia had "free" healthcare? Or is the expense because it's paramedical?


The girls in my daughter's age group range, at school, in age between 14-16 are all in that "mean girls" stage in their life. Some are really nasty and I've had regular meetings with the teachers about keeping them at bay. The girls find creative ways to be cruel. Unfortunately the 1-2 girls in my daughter's year group who are kind enough to talk to her are also bullied for hanging out with my daughter. In 2019 (before COVID) none of the children (boys or girls) invited her to their birthday parties. At that point I realised the writing was on the wall. Having said that, the boys in her class are good fellas and hang out with her at lunch and recess and as she's sporty and shoots basketball with them. She has a crush on one boy but it won't work out as she's 5foot9 and towers over him :lol:

The school is working with her to look at vocational pathways into a trade/skill at a community college. She has the capacity to go to uni but currently her aptitude for higher studies is compromised by her lack of focus (which might be linked to ADHD).

Our healthcare system is free but SLP is not covered unless you qualify for assistance which she doesn't.

IsabellaLinton wrote:
Thanks. Sadly her father is a douchebag deadbeat who left when she was six months old, and then actually disowned her, after suing her in court. So I can't say that all parents love or support their kids. But, that's another rant.

Re: Your daughter's messiness etc. Has she been tested for ADHD? Maybe that diagnosis would afford her some new supports?


Yeah I guess children can't choose their parents. Hopefully there's an extended family to keep your daughter protected. My daughter only really has me and mom to form a protective bubble, The grandparents are too old and are in another state but she does face time with them regularly.

My daughter was medicated for ADHD for 10 years. We took her off all her medication during COVID and she is managing but you are right, her messiness started when she was taken off the stimulants and anti-anxiety medication.



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13 May 2021, 10:36 pm

cyberdad wrote:
Hopefully there's an extended family to keep your daughter protected.


Nope. My mother is 82 and has cancer. My dad is deceased. My brother is the trustee of my Will, but he wouldn't take a caregiving role. Her father's family doesn't speak to her anymore. His parents disowned their child with Down Syndrome as well, so that speaks volumes about their mentality - or lack thereof.

I wonder if you could get your daughter back on the ADHD meds? Why did she stop?

The mean girls sound awful. I know all about them. Women can be absolutely horrible to one another in insidious ways. I don't blame her for feeling more comfortable with the guys in her class. Reassure her that it's OK to have male friends. I wouldn't have survived without them. Send her a hug from me, as well. :heart: