Is it possible to regress/become lower functioning?

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Izera
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14 Feb 2017, 6:48 pm

My daughter was diagnosed with PDD-NOS when she was 2 and they said she was low-functioning. We did a lot of early therapies. When she was 7 her psychiatrist remarked that had I been bringing her in for diagnosis that day and not back when I did, she would have been diagnosed with Asperger's instead. When she was 14 a psychologist changed her diagnosis to high-functioning autism.

She graduated high school with honors and an Advanced Studies diploma with some special ed support.

Well it's been 5 years since graduation, she will turn 23 this month and it's like we're spinning our wheels. Small talk situations, people remark that they can't tell anything is different about her. But she has problems getting a job. Stressful situations like job interviews, it all comes out. She will have interview after interview, she gets coaching, and....nothing. She's had two jobs, the first was two years ago for a few months, the second started at the end of last year. I found out she wasn't telling interviewers she was disabled and I coached her on how to say she was and that's how she got the second job.

Within the jobs, I've had to play helicopter mom far too many times by acting as her disability advocate. She has a high IQ and a large vocabulary. But when it's not routine stuff, when it's complex or unusual circumstances, she can neither put the words together to say/explain the concepts in her mind nor can she understand what is being expressed to her. She was scheduled past her end date at the last job and couldn't express she wasn't going to be in the same state for when she was scheduled. If one manager asks her to stay but another one, not knowing that, gets jerky about it, she can't explain that she was told to stay. She can't set up direct deposit on her own. Things like that.

Her ability to handle frustration is very low. Plus she has the typical no filter so her emotions are on display and extreme. Yesterday she was sobbing her heart out over not being able to finish tasks due to large volume of customers and one jerky customer. I can see biting back tears but screaming about it while crying hard?

She can't live independently because she has no common sense. She can't budget. She needs coaching if she's home and something goes wrong and she needs to call emergency maintenance. She can't plan out cleaning the house. If I'm sick and say "clean the house", it doesn't get done. If I tell her individual tasks, then she can do it.

Every time she has been tested, her developmental age and social/emotional age are only 2/3 of her chronological age. First time tested, 18 months old, she tested as a 12 month old. All further testing kept the same gap, such as when she was 14 and testing in the 9-10 year old range. So if that gap is still holding true, developmental and social/emotional would be roughly equal to a 15 or 16 year old. But she's not able to do a lot of things that 16 year old children can do with ease.

We've been in contact with DORS and they did some testing and in two days we meet again with her caseworker. However while I do not have the specifics, the form letter they sent after testing said she was severely impaired in several life skills areas, severe enough that she's bypassing the wait list and will get services immediately. Seeing how it was their doctor and doctors working for the government tend to downplay to save budgets, she's gotta be pretty bad off.

I looked at the new DSM standards for ASD. According to that, she'd be high functioning because she has a high IQ and she can talk in complete sentences. But with all that she can't do when it comes to daily living, I'm really wondering if she's not high functioning any more, if she's more in the moderate range.

Is it possible to move backwards? Any advice for getting her back to needing only minimal support like when she was in school?



BTDT
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14 Feb 2017, 7:07 pm

Change is hard for those on the spectrum. You should expect some apparent regression every time she has to go through a significant change. And she may not be able to handle multiple changes at once, like moving away and taking on a new job. At least it sounds like that right now.



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14 Feb 2017, 10:53 pm

The thing about school is that it mostly teaches us how to be good at school. It doesn't always translate to good life skills.

I wonder if your daughter is pursuing the right career for her. Of course, you've thought about that already.

But the short answer is, yes, we can appear more impaired in some situations. We can even BE more impaired when we are all stressed out.

We can also improve at any time. Expect it. Expect that she'll get her wheels spinning in the right direction at some point. Gosh, my 20's sucked. I didn't really get myself going in a good direction until I was 35. I literally joined a cult in my 20's. And I did nothing but move from job to job and rack up student debt going to grad school for a profession I wasn't socially prepared to join.



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15 Feb 2017, 2:33 am

Look at it as being a flexible scale in all areas, rather than a single bar or a few distinct categories.

Environments and pressures can change throughout your daughter's life. This doesn't mean she's changing categories, just that she has new things to cope with.

I am similar to your daughter. If someone told me to "clean the house" I'd almost certainly go into a shutdown. Where do you even start? What first? How?!

But here's the thing, I live 'independently' (admittedly with a husband, but I've lived independently in the past) and I'm successfully raising a daughter of my own. Don't assume that she wouldn't manage or that she's incapable.

I can't clean the house when someone else has left mess. Things start spiraling as soon as someone else leaves something lying around, so I am absolutely useless when my husband leaves a few dishes or a few things scattered around the house. Then, it just piles up. But if you put me in a spotless house entirely on my own, with no outside influence, I can guarantee that it would stay spotless. It may not be that she's incapable of keeping somewhere clean and tidy, even if she's incapable of making somewhere clean and tidy. This may not seem like a big difference to you, but is considerable when you're talking about someone's ability to live on their own.

And over time she'll find new things that work for her in any situation, but at the moment she does have you 'coaching' her and that may be restricting the natural progression. Remember that if you're NT, what works for you may not be right for her.



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15 Feb 2017, 7:25 am

I agree with the other posters that this is not regression. As kids age, the expectations of them and requirements go up. That is why some people don't get diagnosed until later stages of childhood (or later.) Failure can also demotivate them and often they develop comorbids like depression which make it even harder for them.

The fact that your daughter has access to help is a very good thing. I wish you all the best.



Izera
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15 Feb 2017, 12:46 pm

The moving thing BDTD mentioned, that could be part of it. I hadn't really thought about it, but our living situation hasn't been that stable, we've moved 7 times since 2013.

And yeah, there is a big difference in expectations between school and real life.

It's just, it seems like things were better in the past. Maybe they weren't, maybe it just wasn't so obvious as it is now when I'm trying to give her the life skills needed to handle her own life.



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15 Feb 2017, 9:05 pm

It sounds like it's not any kind of regression (which suggests to me a return to an earlier developmental stage) but a situational loss of function (you are able to do less while feeling the effect of some stressful events environment or interaction--or all of those things at once.)

I think this happens throughout the lifecycle. I worry that in old age the accumulated physical ailments may result in a dramatic loss of function. I have at times in my 20s, 30s and 40s been less competent and capable than at other times, often without understanding why.


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16 Feb 2017, 7:11 am

It can be very hard to identify problem issues that are preventing here from accomplishing the tasks of daily life. Some things that seem trivial can be huge road blocks. Sort of like the OCD that can't park the car when the odometer ends in 99. If you were working from a list every day you may be able to spot the problem issues if she does the easy stuff first. Then you could discuss the stuff that doesn't get done.

I usually measure time by events or tasks completed. This can be very frustrating to someone who goes by time measured in hours.

Grocery shopping is best done during the off times when the store isn't so busy. It may be worth going to a slightly more expensive store if the experience isn't so nerve wracking.

It can make a lot of sense for an Aspie to buy several pounds of chicken to make the same food day after day. Some of us actually like to eat the same food every day. Less chance of food spoiling if you do that. And you save money.



Izera
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16 Feb 2017, 10:37 am

DORS had a psych eval done on my daughter in December. I just got a copy of the results. There have been changes and actually has been some outright regression.

If it weren't for the new DSM, her diagnosis would have changed again. The tester said flat out it was clearly Asperger's Syndrome. She apparently now openly shows most of the typical characteristics for Asperger's Syndrome. That is something I wouldn't have noticed, since I live with her daily and I have no other children to compare, but all those people who never saw a problem in the past means that what she displays is more extreme now.

She also tested for 2 learning disabilities, Writing Fluency and Mathematics. These did not exist in school and her grade equivalents (6th grade for Writing Fluency, 9th grade for Mathematics) are far, far lower than she was testing in school. She also now has a diagnosis of Dyspraxia.

The ADHD is gone. She no longer has an ADHD diagnosis.

Since she does want to go to college, there was a list of accommodations. There were a huge number listed, much larger than her IEPs listed as needed every year. She went from a little extra time on tests and small group testing to a huge amount of extra time and individual testing. She also is now recommended for note-taking services, not just a copy of instructor notes and a lower workload, meaning less courses at a time.

So yeah. Wow. Huge change and most of it backwards.



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16 Feb 2017, 11:32 am

Izera wrote:
Since she does want to go to college, there was a list of accommodations. There were a huge number listed, much larger than her IEPs listed as needed every year. She went from a little extra time on tests and small group testing to a huge amount of extra time and individual testing. She also is now recommended for note-taking services, not just a copy of instructor notes and a lower workload, meaning less courses at a time.

So yeah. Wow. Huge change and most of it backwards.


The change in the IEP might be a reasonable reflection of how difficult the transition to a university environment can be. They might be adding to it in order to build in padding for the that experience.

I had no diagnosis and no clue (other than knowing that I was different, sensitive and could not always function when others could) and so no accommodations. I followed the family expectation that I would go off and live alone. Test results meant I could be accepted at elite universities and I was. But I found the mechanics of living in a shared apartment and dealing with mass transit almost unendurable and totally exhausting. I got very, very ill and dropped out after a couple of semesters and then drifted around in a weird state of isolated desperation for a few years before returning to a school at a different elite university. That went well for a couple of years and then my dad died and I went into a tailspin for a few years.

I never graduated though I probably am about a semester's worth of credits shy of what I would need. I had technical skills and found employment with them and never went back.

I imagine that if I had had the sort of accommodations that people get today I would be a Doctor of Philosophy by now, and contributing something useful to research that would advance civilization... though, realistically I would have probably found postgrad academic politics an unnavigable mess. Who knows what might have been?

I hope things go well for your daughter. I wouldn't take these accommodations as a particularly dire sign-they sound like reasonable attempts to maximize her opportunities to achieve success in an inherently stressful environment.


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Izera
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16 Feb 2017, 11:36 am

What worries me more than the accommodations is the fact that she was grade appropriate for all academic areas while in high school and now she's at 6th grade/9th grade levels. That's going backwards a lot.

And I'm also worried about the fact that she's now obviously showing symptoms and oddities. When she was younger, many many people told me they couldn't tell that she wasn't an average/NT child.

And where did the learning disabilities come from?



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16 Feb 2017, 11:56 am

That can happen just because the test was on a bad day. I have had a number of IQ tests in the vicinity of 135, but have also tested at 116 on a bad day. That's not a defect in the tests. I am not always equally mentally capable. I guess this is true for everybody, but I think that for many autistic people the range is wider.

I imagine it's something like the difference between the typical emotional range that most people experience and the sort of thing bipolar people go through with extreme swings to higher highs and lower lows--but in terms of various kinds of mental function.

I find executive functioning mysterious and frustrating. I can debug code and write recursive parsing routines but find it challenging to manage a budget or get places on time. I understand things in the abstract that are very complex but get overwhelmed by complexity in the mundane details of my life. I am not really independent, but rely heavily on my wife. I can do a lot of things that she can't do and can explain things to her that I have come to understand deeply without much effort, but without her, I am lost and small obstacles become insurmountable for me.

I can't really explain it except to say, there are kinds of thought that bog my mind down, like a vehicle in mud. Effort doesn't necessarily get you out, you need to find a different route and my need a tractor to pull you out if you get stuck, if you'll pardon the extended, strained metaphor.


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16 Feb 2017, 1:05 pm

Izera wrote:
DORS had a psych eval done on my daughter in December. I just got a copy of the results. There have been changes and actually has been some outright regression.

If it weren't for the new DSM, her diagnosis would have changed again. The tester said flat out it was clearly Asperger's Syndrome. She apparently now openly shows most of the typical characteristics for Asperger's Syndrome. That is something I wouldn't have noticed, since I live with her daily and I have no other children to compare, but all those people who never saw a problem in the past means that what she displays is more extreme now.

She also tested for 2 learning disabilities, Writing Fluency and Mathematics. These did not exist in school and her grade equivalents (6th grade for Writing Fluency, 9th grade for Mathematics) are far, far lower than she was testing in school. She also now has a diagnosis of Dyspraxia.

The ADHD is gone. She no longer has an ADHD diagnosis.

Since she does want to go to college, there was a list of accommodations. There were a huge number listed, much larger than her IEPs listed as needed every year. She went from a little extra time on tests and small group testing to a huge amount of extra time and individual testing. She also is now recommended for note-taking services, not just a copy of instructor notes and a lower workload, meaning less courses at a time.

So yeah. Wow. Huge change and most of it backwards.




If the ADHD diagnosis was legit in the first place, it is not gone. She just is not below the functioning level in those skills right now to qualify for a diagnosis. It is not uncommon to blip in and out of of these categories because development is uneven. ADHD and autism do not go away. Sometimes they can cope better relative to their peers than they can at other times and the gap is not to big. That is more the determinant than anything else IMO. It is not regression to regain a diagnosis so much as the gap between the child and her peers has increased.

The new learning disabilities is another matter and the material maybe was easy enough before that they are not a factor or it is a misdiagnosis.



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16 Feb 2017, 1:09 pm

ASDMommyASDKid wrote:
development is uneven. ADHD and autism do not go away. Sometimes they can cope better relative to their peers than other times. That is more the determinant than anything else IMO. It is not regression to regain a diagnosis so much as the gap between the child and her peers has increased.


Coping skills. Her coping skills are degraded because she has had to deal with a lot of change in her life.

Sort of like going in for surgery-- a blood presssure of145/90 is perfectly fine when you are about to undergo sedation. Kinda high when getting a routine physical in the doctor's office. Same person, different situation.



Izera
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16 Feb 2017, 4:25 pm

Now that I've had some time to think about it, she couldn't possibly have Asperger's Syndrome. There was a reason her psychiatrist said that she would have been diagnosed and didn't formally change the diagnosis. The reason was confirmed by her speech therapist, developmental pediatrician and psychologist.

I can't remember the wording exactly, but the DSM edition in effect at the time said that Asperger's Syndrome had a disqualifier. Either there had to be no abnormal language development from birth-age 3, or there had to be an abnormality of a certain type. If there are early language abnormalities then a person is disqualified from an Asperger's Syndrome forever, even if the person is a textbook example from age 3 on.

And that's why my daughter was given PDD-NOS for a diagnosis. Her social skills were textbook Asperger's Syndrome but her language was all wrong. Her communication skills were textbook classic autism, but she didn't have enough social impairments. They said that the disparity put her in the PDD-NOS category unless her social skills worsened in the future to reflect autism, but the early communication abnormalities (present until age 4½) meant that Asperger's was forever ruled out.

As far as the ADHD - I don't understand that. She used to be so severe that she was diagnosed and started on medicine at age 2. That's pretty severe. When she had a second full psych eval at age 14, the examiner confirmed it then as well. Maybe she's figured out behavioral controls pretty well?



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16 Feb 2017, 6:48 pm

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.