What are signs of level 2 autism as opposed to level 1?

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sohil142003
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30 Jul 2022, 4:56 pm

I’m curious to see where I fall. I have never been formally diagnosed with autism now turning almost 19, but a therapist was sure I had it at 16, and I myself am sure I have it too. I have a hard time functioning and am now a highschool dropout going nowhere in life. I’m curious what the signs of level 2 functioning(moderate) would be as opposed to level 1. I have other issues as well so I’m not sure if it can all be chalked up to autism. Would someone with level 2 autism even be able to go through life undiagnosed or would it always be caught early on? I have had numerous outbursts and involvement with the police due to aggressive behavior in my life so I’m just curious if this can be attributed to a moderate degree of autism. Any knowledge on this topic would be greatly appreciated



IsabellaLinton
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30 Jul 2022, 5:08 pm

I was diagnosed Level 2 at age 49.

I went my whole life without a diagnosis, but that's because I didn't seek one until then.
After age 18 no one could suggest it for me.

My teachers, parents, employers, etc., all knew I had glaring "differences" whether it had a name or not.
I went to speech therapy as a child, and other psychology / psychiatry for specific issues as an adult.

The clinical difference is that I had more anecdotal evidence of ... everything ... for my diagnostic appointment, and my functional score data was consistently low (around 5th percentile or less).



sohil142003
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30 Jul 2022, 5:19 pm

IsabellaLinton wrote:
I was diagnosed Level 2 at age 49.

I went my whole life without a diagnosis, but that's because I didn't seek one until then.
After age 18 no one could suggest it for me.

My teachers, parents, employers, etc., all knew I had glaring "differences" whether it had a name or not.
I went to speech therapy as a child, and other psychology / psychiatry for specific issues as an adult.

The clinical difference is that I had more anecdotal evidence of ... everything ... for my diagnostic appointment, and my functional score data was consistently low (around 5th percentile or less).

What do you struggle with compared to NT’s as a diagnosed level 2 adult? What did you do in your adult life before diagnosis? From my understanding(and I’m sorry if I’m mistaken) level 2 autists need substantial support in their day 2 day lives.



IsabellaLinton
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30 Jul 2022, 6:03 pm

I do need substantial support.
That doesn't mean I get it.
It means I suffer tremendously, putting myself at risk, or else I avoid life altogether.


What did I do before?
Well, I was robbed, beaten, raped, exploited, deceived, and scammed several times.
I was a victim of identity theft.
I lost all my assets in the world to a con artist, including my home.
My husband left me for another man, and took all my money.
I raised my children alone and had a clinical nervous breakdown (adrenal system failed).
I had strokes.
I had nearly all of my internal organs replaced or removed.

I struggle most with personal safety and being vulnerable to others because of NVLD.

Also:

Mutism
Face blindness (can barely watch TV or movies / can't recognise anyone)
Can't read people's eyes or expressions (reading the wrong vibe)
Don't really make my own facial expressions (sending the wrong vibe)
Difficulty with inferences and understanding people's motive
Auditory and Verbal disabilities (I learn only by reading)
No masking skills (can't blend in)
Being far too honest
Expecting others to be honest (trusting too many people)
Emotional dysregulation


Alexithymia - not understanding my own emotions
Poor Interoception - not knowing my body signals (hunger, thirst, fatigue, fear, safety)
Agoraphobia
Scopophobia
Stimming in public
No eye contact (I barely even face people)
Won't use telephone or leave voicemail messages
Won't answer doorbells
Difficulty expressing emotions even to my own family
Need for routine
Sensory Processing Disorder - extreme
Photophobia, Misophonia, Smellophobia, Texturophobia, Foodophobia
Avoidance of sunshine (blackout curtains, special glasses)
I get sick from electric light, sunlight, cooking smells, human speech sounds
Need for routines and "same" things which are predictable

Shutdowns, meltdowns, self-harm, avoidance
BFRB's too numerous to list
Not knowing how to self-advocate
Not knowing how to ask for help

Image


Supports I've had since diagnosis:

Trauma Psychologists (three)
ASD Social Worker
Occupational Therapist (about 200 hours)
Lawyers and court-support services
Speech-Language Therapist
Equine Therapy (for PTSD)
Neuropsychologist and Neuropsychiatrist
General Psychiatrist
Geneticist (looking for gene mutation)
Hypnosis
Physical Therapy
Vestibular Therapy
EMDR
Medications
Permanent Long-Term Disability benefits
I'm also allowed a caregiver / assistant at most venues



Joe90
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30 Jul 2022, 6:50 pm

Level 2 autism is another way of saying moderate autism. Usually level 2 autistics have a spiky profile in their symptoms, like they can be high-functioning in some ways but low-functioning in other ways.


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sohil142003
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30 Jul 2022, 6:52 pm

IsabellaLinton wrote:
I do need substantial support.
That doesn't mean I get it.
It means I suffer tremendously, putting myself at risk, or else I avoid life altogether.


What did I do before?
Well, I was robbed, beaten, raped, exploited, deceived, and scammed several times.
I was a victim of identity theft.
I lost all my assets in the world to a con artist, including my home.
My husband left me for another man, and took all my money.
I raised my children alone and had a clinical nervous breakdown (adrenal system failed).
I had strokes.
I had nearly all of my internal organs replaced or removed.

I struggle most with personal safety and being vulnerable to others because of NVLD.

Also:

Mutism
Face blindness (can barely watch TV or movies / can't recognise anyone)
Can't read people's eyes or expressions (reading the wrong vibe)
Don't really make my own facial expressions (sending the wrong vibe)
Difficulty with inferences and understanding people's motive
Auditory and Verbal disabilities (I learn only by reading)
No masking skills (can't blend in)
Being far too honest
Expecting others to be honest (trusting too many people)
Emotional dysregulation


Alexithymia - not understanding my own emotions
Poor Interoception - not knowing my body signals (hunger, thirst, fatigue, fear, safety)
Agoraphobia
Scopophobia
Stimming in public
No eye contact (I barely even face people)
Won't use telephone or leave voicemail messages
Won't answer doorbells
Difficulty expressing emotions even to my own family
Need for routine
Sensory Processing Disorder - extreme
Photophobia, Misophonia, Smellophobia, Texturophobia, Foodophobia
Avoidance of sunshine (blackout curtains, special glasses)
I get sick from electric light, sunlight, cooking smells, human speech sounds
Need for routines and "same" things which are predictable

Shutdowns, meltdowns, self-harm, avoidance
BFRB's too numerous to list
Not knowing how to self-advocate
Not knowing how to ask for help

Image


Supports I've had since diagnosis:

Trauma Psychologists (three)
ASD Social Worker
Occupational Therapist (about 200 hours)
Lawyers and court-support services
Speech-Language Therapist
Equine Therapy (for PTSD)
Neuropsychologist and Neuropsychiatrist
General Psychiatrist
Geneticist (looking for gene mutation)
Hypnosis
Physical Therapy
Vestibular Therapy
EMDR
Medications
Permanent Long-Term Disability benefits
I'm also allowed a caregiver / assistant at most venues

I’m very sorry you had to go through all this, genuinely am very sorry. Right now I am an 18 year old man and am very lost in what to do with life, and I can relate to some of your problems. What were you doing at 18? Has your medication helped any of your issues? If the medication has helped, what meds specifically helped?



IsabellaLinton
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30 Jul 2022, 6:53 pm

Joe90 wrote:
Level 2 autism is another way of saying moderate autism. Usually level 2 autistics have a spiky profile in their symptoms, like they can be high-functioning in some ways but low-functioning in other ways.


Spiky in which symptoms?

I don't have spikes in the DSM-5 criteria, and my symptoms are persistent on a daily basis.

The spikes I've heard of are often found in IQ testing, but formal IQ tests aren't part of an ASD diagnosis.



IsabellaLinton
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30 Jul 2022, 7:08 pm

sohil142003 wrote:
I’m very sorry you had to go through all this, genuinely am very sorry. Right now I am an 18 year old man and am very lost in what to do with life, and I can relate to some of your problems. What were you doing at 18? Has your medication helped any of your issues? If the medication has helped, what meds specifically helped?




Thanks. That's sweet of you.
I'm sorry you're struggling too.


At 18:
I was very anxious and depressed. I didn't get on well with my mother and most of my extended family treated me like an outcast because I wasn't like them. I was also in an emotionally abusive relationship with the man I later married, although I didn't see the signs because I had no friends to confide in. My grandfather had committed suicide and my home life was messed up. My school counsellor told me that since I loved reading and academics I should go to University. I chose a school far away from home so I could live on my own in a dorm and get away from the issues at home. School was very challenging for me (socially, functionally) and I didn't learn how to be independent, but that's another story.

After graduation I didn't want to move back home because I was used to being on my own. I ended up starting a career, and getting married (disaster) before getting divorced (disaster).

Other than the brief marriage, I've been on my own since age 18 (functional disaster x 10000).

I love my kids and I don't regret being a single mother but it's EXTREMELY difficult.


Meds:

I'm just learning now that I don't really respond to meds for genetic reasons.
I've tried several SSRI (the best was 25 mg of Zoloft -- anything higher was awful)
Resperidol for BFRB, extreme stimming, and self-harm
Quetiapine for being a basket case
Sleeping medications (Ambien is best but still doesn't work)
Buspar for anxiety
Beta Blockers for anxiety

None of it works for me but it turns out I don't metabolise medications.

The best so far is actually a bunch of vitamins and supplements, believe it or not.



Last edited by IsabellaLinton on 30 Jul 2022, 7:12 pm, edited 1 time in total.

Joe90
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30 Jul 2022, 7:10 pm

IsabellaLinton wrote:
Joe90 wrote:
Level 2 autism is another way of saying moderate autism. Usually level 2 autistics have a spiky profile in their symptoms, like they can be high-functioning in some ways but low-functioning in other ways.


Spiky in which symptoms?

I don't have spikes in the DSM-5 criteria, and my symptoms are persistent on a daily basis.

The spikes I've heard of are often found in IQ testing, but formal IQ tests aren't part of an ASD diagnosis.


Any symptoms, as everybody's different so there's no one size fits all, in other words there's no set symptoms a person has to have severity in to qualify for level 2. If your symptoms are persistent on a daily basis but you're not non-verbal (as in unable to talk) and you can do some things for yourself (you do have a daughter) then you're level 2. Of course you have a lot of co-morbids and PTSD so that might also contribute a little bit.


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Diagnosed with mild ASD but I don't identify as autistic


IsabellaLinton
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30 Jul 2022, 7:17 pm

Joe90 wrote:
IsabellaLinton wrote:
Joe90 wrote:
Level 2 autism is another way of saying moderate autism. Usually level 2 autistics have a spiky profile in their symptoms, like they can be high-functioning in some ways but low-functioning in other ways.


Spiky in which symptoms?

I don't have spikes in the DSM-5 criteria, and my symptoms are persistent on a daily basis.

The spikes I've heard of are often found in IQ testing, but formal IQ tests aren't part of an ASD diagnosis.


Any symptoms, as everybody's different so there's no one size fits all, in other words there's no set symptoms a person has to have severity in to qualify for level 2. If your symptoms are persistent on a daily basis but you're not non-verbal (as in unable to talk) and you can do some things for yourself (you do have a daughter) then you're level 2. Of course you have a lot of co-morbids and PTSD so that might also contribute a little bit.


Oh for sure. Everyone is different. I'm not saying that my reason for being Moderate would be the same as everyone else's. I know some other 2's from WP and we all seem very different even though we all need significant support.

I thought that you meant my own profile would be spiky. Being able to speak or not isn't part of the diagnostic criteria, but in terms of my functional abilities mutism definitely hinders my ability to be completely independent. Same with parenting. The DSM doesn't say autistics can't reproduce. It certainly makes parenting difficult, though.



IsabellaLinton
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30 Jul 2022, 7:19 pm

Joe90 wrote:
in other words there's no set symptoms a person has to have severity in to qualify for level 2.


I disagree with this.
I don't know what the cutoff scores are, but I have clinical data for every part of my diagnosis.
It's all based on standardised testing and evidence, rather than the doctor's subjective opinion.



sohil142003
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30 Jul 2022, 7:23 pm

IsabellaLinton wrote:
sohil142003 wrote:
I’m very sorry you had to go through all this, genuinely am very sorry. Right now I am an 18 year old man and am very lost in what to do with life, and I can relate to some of your problems. What were you doing at 18? Has your medication helped any of your issues? If the medication has helped, what meds specifically helped?

Thank you what vitamins and supplements may I ask? How old are you now as well? Did you graduate college/university?


Thanks. That's sweet of you.
I'm sorry you're struggling too.


At 18:
I was very anxious and depressed. I didn't get on well with my mother and most of my extended family treated me like an outcast because I wasn't like them. I was also in an emotionally abusive relationship with the man I later married, although I didn't see the signs because I had no friends to confide in. My grandfather had committed suicide and my home life was messed up. My school counsellor told me that since I loved reading and academics I should go to University. I chose a school far away from home so I could live on my own in a dorm and get away from the issues at home. School was very challenging for me (socially, functionally) and I didn't learn how to be independent, but that's another story.

After graduation I didn't want to move back home because I was used to being on my own. I ended up starting a career, and getting married (disaster) before getting divorced (disaster).

Other than the brief marriage, I've been on my own since age 18 (functional disaster x 10000).

I love my kids and I don't regret being a single mother but it's EXTREMELY difficult.


Meds:

I'm just learning now that I don't really respond to meds for genetic reasons.
I've tried several SSRI (the best was 25 mg of Zoloft -- anything higher was awful)
Resperidol for BFRB, extreme stimming, and self-harm
Quetiapine for being a basket case
Sleeping medications (Ambien is best but still doesn't work)
Buspar for anxiety
Beta Blockers for anxiety

None of it works for me but it turns out I don't metabolise medications.

The best so far is actually a bunch of vitamins and supplements, believe it or not.



IsabellaLinton
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30 Jul 2022, 7:23 pm

Joe90 wrote:
Of course you have a lot of co-morbids and PTSD so that might also contribute a little bit.


Yes and no.
I agree that I do have a lot of co-morbids and I have PTSD.
Yes that affects my functioning at this stage of my life.

My doctor was aware of the co-morbids.
I had to provide a lot of evidence of my childhood struggles (prior to any PTSD or co-morbids).
The only co-morbid I would have had from birth was ADHD.



IsabellaLinton
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30 Jul 2022, 7:49 pm

Evidence I don't function without support:

When I didn't have support, I tried to do things on my own and failed miserably. Sure I went to school and had a career but they nearly killed me (stress, lack of support, medical problems, frequent hospitalisations, adrenal collapse, strokes).

I was also vulnerable to assault and exploitation. This is because I couldn't read people, read danger, pick up nuance or inference, understand motive, or see cause and effect. That's all part of my non-verbal learning disability which is part of my ASD. In that respect if I didn't have ASD I likely wouldn't have been manipulated and assaulted (or at least, not to the same extent).

Even though it might seem like I'm doing OK now, that's because I have the liberty of avoiding everything I don't like. I don't go to work, don't go to school, and don't interact with anyone or anything I don't want to. It's a trade-off I've had to make, to survive without a full-time caregiver.

If I were to try living a "normal" life I would need a caregiver 24/7 so that I don't fall into the same traps as before.



sohil142003
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30 Jul 2022, 8:34 pm

IsabellaLinton wrote:
Evidence I don't function without support:

When I didn't have support, I tried to do things on my own and failed miserably. Sure I went to school and had a career but they nearly killed me (stress, lack of support, medical problems, frequent hospitalisations, adrenal collapse, strokes).

I was also vulnerable to assault and exploitation. This is because I couldn't read people, read danger, pick up nuance or inference, understand motive, or see cause and effect. That's all part of my non-verbal learning disability which is part of my ASD. In that respect if I didn't have ASD I likely wouldn't have been manipulated and assaulted (or at least, not to the same extent).

Even though it might seem like I'm doing OK now, that's because I have the liberty of avoiding everything I don't like. I don't go to work, don't go to school, and don't interact with anyone or anything I don't want to. It's a trade-off I've had to make, to survive without a full-time caregiver.

If I were to try living a "normal" life I would need a caregiver 24/7 so that I don't fall into the same traps as before.

What is your age now? How are you able to do this so much later in life then me for example? I get away with it now I feel like because I am so young but I’m curious as to your age and how you do jt



IsabellaLinton
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30 Jul 2022, 8:39 pm

I'm not sure what you mean.
How am I able to do so much of what?
I don't do much at all.
I left work on disability.
I pay the bills from disability pay /retirement pay.

I don't think I get away with anything at this stage.
I put in all the effort about 20-30 years ago.

I don't have an intellectual disability or low IQ.
My daughter helps me with activities out of my comfort zone.

I'm in my 50s.