Is it possible to regress/become lower functioning?

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Splitting hairs between Asperger's, Autism and PDD-NOS is not going to clarify things because they are all forms of autism. Yes, Asperger's is supposed to mean no significant language delay in the early years, but a lot of times the diagnosing was inconsistent and regardless it is not precise which is why it was revamped. As an example, my son was given HFA as a diagnosis instead of Asperger's despite no significant language delay b/c they thought Asperger';s sounded too mild for him b/c of his social delays.

I agree with BTDT about coping skills. Coping skills mask deficits and when the expectations become too high too fast or their is too much change, it is common for the condition to look worse when really it is the environment that has become harder to deal with.

The labels are intended to indicate how much help someone might need.
But, they don't actually tell you what kind of help you need.
You need to figure out exactly what kind of help she needs. Many professionals mean
well, but they are handicapped by not having Aspergers, so they can't really figure out
people on the autism spectrum.

Chiming in to agree with both BTDT and ASDMommy regarding coping skills fluctuating depending on the demands of the environment. I've seen this with my teenage child over the last few years, who flew along under the radar and seemed super mild for many years. Now the increasing academic demands of a challenging college prep school coupled with the social demands of the teenage years in general make the issues and gaps from peers more obvious. I suspect college and young adulthood will have that forward/backward, push/pull aspect as well.

All the responses to this thread have been very interesting to read! You all have the best insights.

Ugh, the daughter is not reacting well to the psych test results. She's been acting squirrelly all day over the loss of math skills. Obsessing, saying she's embarrassed, things like that. I can see why, she was always strong in math when in school.

Thanks to all your advice, I'm trying step by step directions when I want something done. Let's see if it works.

But that will work short-term. How do I get her to not needing a caregiver? Able to figure out steps on her own?

Because that's my end goal. Quality independent life. Where she doesn't *need* to live with me or doesn't *need* to get married just to have someone to care for her. I don't want her so dependent that she can't leave a bad situation and live on her own simply because she needs the other person so much. Been there, done that, miserable existence and I want better for her.

I don't know. I'm just tired, very tired. We were doing pretty good these last few years but the problems are becoming more and more apparent. So just enjoying the calm, minimal problems time was obviously a bad decision, I should have been working at things more.

The DORS psych eval only took and hour and a half. Maybe step one is figuring out Medicaid and getting a second opinion. I've never seen a psych eval take less than 6 hours over 3 days.

Here is probably a stupid question, but if she graduated HS and is not in college wouldn't her academic skills decrease because of that? I mean if she has not been writing papers and doing advanced math for a few years those skills would atrophy wouldn't they? Most adults don't remember their trig and calc.

I am in the same boat as your daughter in some ways. I was in a young adult program for a year and a half and it helped me so very much. But it sounds like your daughter is doing fast food work. I did it for four months and the stress was too much. I can go more in detail later. I'll also give you the name of the program I was in. It is very beneficial if she is willing to do the work. I started to stress out after a year and a half and am now just focusing on getting my GED and a job that suits what I can do well. I'll send you a PM.

Testing isn't good for most Aspies. Yes, just being evaluated is a big source of stress.

But, perhaps the biggest source of stress is your particular situation when you graduate and the question "what next" has no obvious answer.

I completely regressed when demands exceeded capabilities, I had no idea my capabilities weren't particularly expansive to begin with and realized I'd been paddling all along and the autism being unacknowledged made me develop complicated mental issues, I certainly became far lower functioning and am still a long time off getting back on a track that will demand improved capability which obviously brings a more fulfilling texture of life but understanding what the fog is and unraveling it between will hopefully mean I don't regress any further.

Some people on the spectrum are lucky in that although it takes longer to get past the learning disability issues, once they do learn they seem to retain that skill in long term memory. This means that once the stress has gone, they may be able to do what they used to much quicker than a normal person. I can do math I haven't looked at for decades.

I've got through stages in my life where I became more "severely autistic" (lack of social skills/severe asocial by choice etc.), and also stages where I became "low functioning" (felt like I couldn't even utter a simple sentence out-loud). With that said I've also went through stages where nobody around me could tell I had it at all (because it was so mild?), and when I excelled with my interest.

So to answer your question I would say yes.

I wonder if there's a specific reason for this?

She didn't regress and become lower functioning. The bar was raised and expectations are much higher than when she was in school. Jobs are a whole different ball game.

Also unless she is asked she should not disclose her disability until after the interview. If she discloses during the interview they can choose to not hire her based on the diagnosis. They aren't allowed to ask about it during the interview for exactly this reason.

Even though I'm now middle aged, I can now put in a full day of work most days without getting tired as I have skills needed to do my job effectively. I'm a much more efficient worker than I was in my 20s.

The problem is that if you don't reveal that you are disabled and the accommodations you need during the interview, you can't get ADA protection. And legally they can't refuse to hire you because of your disability, that is highly illegal, but we all know, wink wink nudge nudge, that they can put a different reason on the paperwork.

Double edged sword. However her social deficits are obvious and her communication skills are terrible enough that she doesn't present well. And that inability to present well, to sell herself in an interview, was making potential employers think things like she's rude or she's not smart enough or she doesn't care enough. She actually made a lot more progress by saying she had a disability that affects her communication skills and she needs ______ accommodations.

But if the psych eval is correct, her math skills went from college level during her last three years in high school to middle school level and a learning disability presented itself. That is a clear cut regression. But that is also making me think we need a second opinion.

Can anyone explain how Medicaid works, especially when it comes to getting an appointment with a psychologist.

I cannot accept the conclusion of the report. A good tester would take into account the time since she was in school when it came to evaluating math. I cannot believe that in school they were playing to her strengths by putting her in standard English classes but Honors Math classes, even talked about whether she could manage AP classes or if her autism was too severe since her mathematics skills were so good that AP classes were a viable option and then 5 years later she has a math-based learning disability. I cannot believe that two different psych evals found a severe case of ADHD that is now magically gone.

Because of her age she is not on my husband's insurance. She is signed up for Medicaid though. How does the process work?

My husband was diagnosed at 50. When he took all those math/language/whatever tests...I know the math test was really low. This from a guy who studied astrophysics in university and passed those classes with As. The raw IQ score was 130. When everything was calculated for the weighted IQ score, that came back 105. My husband was devastated. He couldn't concentrate during the test, and kept panicking.

My husband took those test during a huge stressful time. His job threw him on short term disability because of a need to call the cops size meltdown. No one knew what the hell was wrong with him.

Excessive stress, anxiety, and depression will all affect testing. You don't test as well when all that is foaming around.

Testing is a snap shot in time. A good tester looks at *this moment*, especially when testing for services. I know Aspies who are brilliant at math. Stick them in front of a fast food register during lunch rush. They can't count correct change back or add up a restaurant bill. Are they stupid in small whole numbers? No. The stress of the situations really degrade those skills. Her skills are still there.

*You never said if she was getting SSI as a child, so I am assuming no.

Where I live, your daughter would get services through Easter Seals since she is on Medicaid. They have psychologists and psychiatrist there. The reason for Easter Seals handling it, is there are almost no psychologists (PhD) or psychiatrists (MD) who accept Medicaid anymore in my area. Like literally none. The state pays so little for services, after ACA became law, it seemed like everyone dropped taking Medicaid.

If your daughter gets SSI, she could also pick up Medicare. More providers accept it.

If I was in your shoes, I would quit looking at what happened previously and really focus in the here and now. So your daughter was in the higher math track.

Goal----> getting self sufficient and an entry level job/start of higher education.

You don't need calculus or trig for that.

With the ADHD diagnosis, the autism diagnosis would cover just about any accommodation your daughter would need for work. ADHD has executive functioning issues, but so does ASD. I'm saying an adult with ADHD, the diagnosis doesn't get you any extra benefits you couldn't get from an ASD diagnosis. The only thing I can think ADHD would help is the doctor justifying a prescription for amphetamine salts (like Ritalin), and having the insurance cover it.

My husband went into a severe 3 months long depression after seeing his autism testing scores. The IQ drop from 130 to 105 is what killed him the most. His whole identity was being "smart". If everything else was s**t in his life, at least he was "smart". His testing had massive scatter. Some areas he topped out, and some were so very very low, which caused the weighted IQ to drop.

I don't doubt your daughter is book smart. Supposedly she can't tackle linear algebra or differential equations. She doesn't need those things right now. I'm sure she has a huge chunk of depression and anxiety which isn't helping anything.

If your daughter gets the services she needs to accomplish what she wants, does it matter what the diagnosis? Where I live, autism gets you the most bang for your buck service wise.

Getting services as an adult (unless you are really low and non verbal) is a different deal than a child. Remember, at 23, your daughter can say f*ck this s**t and walk away from all help. There is nothing you or anyone else can do to force her. I would start putting on positive spin on this whole process, because being angry the testing showed a drop, and questioning a diagnosis that gets her more services doesn't make sense. The reason for any drop is called life changed. My husband has/had this happened, and many people in his support group too. Big stressful situation---->huge back slide in skills. But the skills recover when the stress lessens.

Good luck. Sorry I wrote a novel.

Last time I checked autism and ADHD were not mutually exclusive. If she has both, if it was seen all through her childhood, I see no reason to let someone say that officially it is no longer there and then find out in the future that messed a lot of things up for her.

And the reason I question the Asperger's diagnosis is that I had several medical professionals say when she was 7 years old that she could never, ever have that diagnosis because of the early language delays. They all agreed that her current symptoms fit Asperger's to a T, but the exclusion clause regarding language development during the first three years of life meant no Asperger's diagnosis ever (no matter how much of a textbook example she was), that she would either stay in the PDD-NOS category or possibly get shifted over to classic autism if the social problems got worse. And the social problems did get worse at some point and she was officially shifted to high functioning autism.