adult autism regression

IntenseWorld said:

...sadly it's something many autistic females find causes bias against us to our detriment.

I think it's not just females that have that problem.

Certainly I think there are many male high-functioning autistics who adopt the same coping strategy of social mimicking.

The only difference is that because the 'male sterotype' is to be agressive, competitive, and macho, we often end up in prison.

If someone is diabetic but has insulin, their condition is controlled and you see no signs of their condition.  But they are still a diabetic.

Being autistic and using masking skills (and frequently medication too!) means you can often see no visible signs of the condition.  They are still autistic.

Someone can't be a "little bit pregnant".  They are either pregnant or they are not.

So failure to give a diagnosis to some people because they using coping, masking, mimicking skills is ridiculous.

By this, I mean the diagnostic criteria state that it must cause a particular level of impairment.  Who is to say what the level of impairment is?  If the person uses their social mask when they go to their assessment, the clinician will think they seem fine and not diagnose them, no matter how many difficulties they describe.  This is ridiculous!

Autism is a neurological condition, the brain is wired differently, you either have it or you don't.  Yes there might be degrees of impairment, or more accurately, different blends of the traits in each individual, but you still have it.

How can a diagnostician judge in a short assessment what someone's level of impairment is?

Also, there is the issue of alexithymia (difficulty recognising feelings) which would hinder someone greatly in describing their impairments.  Alexithymia is common in autism.  Issues in understanding the 'correct' answer the clinician is looking for may also hinder the autistic person in their assessment.  If you can't describe your difficulties accurately, especially if you are the passive subtype described above, you will 'fail' the assessment test from the off.

The quicker a medical way is found to diagnose the better.  The brain scan they are researching that is 90% accurate for instance, perhaps if they could hurry up and fine-tune that for diagnostic use it would help some people who are otherwise failed.

I believe it only costs £200-300 as well, probably a drop in the ocean to what these snooty psychiatrists earn for wielding their power per assessment...

And the diagnosticians blindly refuse to budge from their outdated, stereotyped views too.  It angers me immensely that they dole out this "some autistic traits but not enough for a diagnosis" to some people that should be diagnosed.  Diagnostic criteria are used subjectively by individual clinicians, whose levels of ASC training, experience and understanding vary greatly.  And yet these are the people who not only wield their power arbitrarily and decide through one piece of paper whether someone qualifies for supports or benefits, but they will not admit when they have made a mistake either.  In a (currently) non-medical field the potential for diagnostic error is so much greater and it's not so much what may be a miniscule minority being misdiagnosed as autistic when they have an alternative issue, but the probably significant amount of autistic adults they fail to diagnose, the "missed-diagnoses".

It doesn't help that there is still no uniform assessment method, a variety of tools are used and sometimes none at all, interpretation of the tools varies subjectively and some diagnosticians rely solely on the tool (I have personal experience of this with my eldest daughter and CAMHS) and zero on the developmental history or discussion of behaviours and examples.  Also length of assessment varies considerably.  It is best practice that several hours are devoted to the assessment, they took barely an hour to do the ADOS-2 (which my research found to be only 77% accurate as it was researched on more classic autistic cases and therefore is not good at picking up high-functioning people) with my daughter and the ADI-R was a checklist exercise with no other discussion and the psychiatrist kept looking at the clock the whole time and cutting me short.  It was cursory, and I know she has AS (let's face it, it takes one to know one) and they have so far failed to diagnose her.  She has the more "female" (passive) presentation.  My other daughter has more classic autistic presentation and she was diagnosed immediately.

There is also the issue of AS sub-types (as per Lorna Wing) and some of these sub-types are more often missed - diagnosticians seem to be unaware of the these sub-types:

Aloof
Most frequent subtype among the lower functioning. Most high-functioning in this group are a mixture of aloof and passive. Limited language use. Copes with life using autistic routines. Most are recognised in childhood. Independence is difficult to achieve. There may be loneliness and sadness beneath the aloofness. Rain Man is an excellent example of this subgroup.

Passive
Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings).

Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenability is an advantage in work, and they are reliable, but sometimes their passivity and naivete can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.

Active-but-odd
Can fall in any of the other groups in early childhood. Some show early developmental course of Kanner's, some show AS. Some have the characteristic picture of higher visuospatial abilities, others have better verbal scores (mainly due to wide vocabulary and memory for facts). May be specific learning disorders (e.g., numerical). School placement often difficult. They show social naivete, odd, persistent approaches to others, and are uncooperative in uninteresting tasks. Diagnosis often missed. Tend to look at people too long and hard. Circumscribed interests in subjects are common.

Stilted
Few, if any clues to the underlying subtle handicap upon first meeting. The features of AS are particularly frequent. Early histories vary. Normal range of ability with some peaks of performance. Polite and conventional. Manage well at work. Sometimes pompous and long-winded style of speech. Problems arise in family relationships, where spontaneity and empathy are required. Poor judgement as to the relative importance of different demands on their time. Characteristically pursue interests to the exclusion of everything and everyone else. May have temper tantrums or aggression if routine broken at home, but are polite at work. Diagnosis very often missed. Most attend mainstream schools. Independence achieved in most cases. This group shades into the eccentric end of normality.

(You can veer between the types and also be a combination of types during different stages of your life.)

I actually do believe that in some areas, there is a deliberate failure to diagnose some people (including children) because without diagnoses it makes it a lot harder to claim on services and benefits.  Perhaps the government is giving with one hand and taking away with the other.  By this I mean, creating the Autism Strategy 2009, the Autism Act 2010, NHS NICE Guidelines and statutory guidance, but without any policing of the system it's lip-service only.  So it appears they are giving to the autistic people of this country, but then they are taking away with the other hand by cutting right down on the diagnoses where they can so less people can claim those supports.

It is tragic that the scientists cannot seem to tackle AS fairly.  They seem to be blinkered, entrenched, and stubbornly refuse to review their perspectives in the face of the Autism Act.

The diagnostics used are appropriate to children, not to adults, who have been forced to adapt over years of difficulty and may not show many of the diagnostic traits. So how about a proper go at adult diagnostics scientists!?

Most adult research focusses on adults with secondary complications, mental health including depression and OCD. They don't seem to be bothered about people who are abler. Indeed they seem to ignore the abler end.

This is shockingly poor science. How can they segregate a research population in this way? How can their assessments be valid? How can they possibly assess the impact of autism on individuals if they only study individuals with secondary problems whereby they cannot effectively separate autism from other factors?

It is well nigh impossible to engage in debate with these scientists. The whiole issue is beset by little closed shops/cliques that wont share. They seem more interested in keeping their individual leads than helping people on the spectrum.

Some areas of science do not live up to expected scientific standards. Its an uneven world science. The ones addressing our needs are too absorbed in intellectual separatism. They don't listen. I doubt they really care about people on the spectrum.

Sadly the world is full of inequalities. We really need a fairer and more balanced approach to the science behind autism. I very much doubt we'll get it.

...sadly it's something many autistic females find causes bias against us to our detriment.  Social expectations are different upon us from an early age, many of us learn social mimicking through cognitive effort and manage to scrape by with huge effort.  Unfortunately many diagnosticians are still not appreciating this and are failing to diagnose many females because they don't recognise the presentation.

I scored very high on the vocabulary section on the WAIS and my brain runs at a very fast speed, so I can cognitively work out some things that come naturally to NTs, but it is at very great mental and emotional cost to me and I need to shut myself away afterwards.  I have only just realised that I mimicked to get by socially all along, because I also found out I have alexithymia (as well as scoring highly for dissociative disorder) so I didn't even identify it in myself.  It's almost like a persona you snap on, and you are so used to doing and it can fool others, but after a while it gets harder to sustain, and it breaks down more and more (much quicker under stress).

When my younger daughter was diagnosed, shortly after I found this information about "high-functioning" (and it's not even a clinical/diagnostic term) so I was very annoyed they put on her report that she is high-functioning, because yes, she is highly verbal and intelligent but is very autistic in many ways and very affected by her traits.  So even the clinicians don't get it right (I couldn't resist emailing the diagnostician about this either ).  A great example of how words and terminology comes into popular use by default, even clinically.

I think one of the things that bugs me the very most, is that although AS is an invisible disability for all with it, the more you are able to adopt a social mask the harder it is to get awareness of or acceptance of your needs.  We're almost shooting ourselves in the foot.  You aren't coping inside and can be in full panic mode but you feel unable to say a word due to the social pressure of the environment you find yourself in.  And as I am now 'regressing' like openheart, I feel less and less inclined/able to wear the social mask because my meltdowns are bubbling just below the surface the whole time and one little stressful thing can make me react.  And because people don't know you are autistic they can assume you are just some overreacting nutter.

Longman, Intense and Hope, that is an amazing in depth oversight reflecting a lot of my own conditional issues. Thank you for sharing

The term high or low functioning term, should be scrapped because it does not allow for the individual to be assessed relative to there own hybrid type condition. I think my high functioning means the ability to intellectually camouflage the condition to others until exhausted.

Interestingly enough, socialising was more fun when I was a child - simpler and more rule bound. I did tend to play with younger kids, and kids are more honest and have not yet learnt small talk. As a child, I struggled with relationships in a different way - I was very possessive and could not share people easily. I had one friend but  we often broke up, and I disrupted the play of other children. I was not adverse to approaching other kids, though, and asking them to be my friends. I did enjoy playing with kids, and it was never tiring. It only became tiring during adolescence when socialising became so much harder - it was no longer about racing each other on a bike but about talking about feelings and fashion. I could not keep up. I also became aware of my difference for the first time, although my parents knew that I was 'odd' since the age of three.

I would also like to add that socialising is very tiring, and although I can enjoy it when I get used to someone, I still need a lot of time alone afterwards in order to recuperate. Socialising uses my whole cognitive apparatus, and there is always a feeling of tension and anxiety when I am around people in a social setting, with the possible exception of my support worker and my mum and dad.

Consequently I have few friends, and most of my social encounters are associated with work or support.

This is very interesting. I am 'high -functioning' in terms of being very verbal, relatively intelligent and insightful, and can live quite independently.  My aspergers is also hidden a lot of the time, and I have learnt how to socialise in a more or less 'normal' way. I express an interest in other people, try and ask them questions, smile and look broadly in their direction. I can even make eye contact, although this is not natural for me and I prefer not to. But I am aware of the social niceties and I try to conform to them as much as possible; this is my public facade, but it covers a lot of internal anxiety, stress and uncertainty. The social skills were studied and learnt intellectually during my teen years, because I experienced a strong desire to fit in and be successful socially - this was before my diagnosis.

I do not speak in a monotone, although I have been told that I sometimes speak too fast and that I have a young voice. But when I try to slow down and speak clearly, I have been told that I have a nice voice.

That said, I do not think my Aspergers is mild. I have poor emotional regulation and can get very upset and angry when I don't get my own  way, to the point of having explosive tantrums; I find it hard to compromise. I have very strong views and get very passionate about things, but I can also be quite rigid and can hammer a point home possibly too far. This is good in the sense that I have morals, but not so good when it makes me angry towards people.

I also have OCD, and I am very ritualistic and obsessive. I find travelling difficult, and struggle with unwanted change, although sometimes I can cope with the unexpected - I am getting better at this.

I get easily distracted by noise and movement, but don't have significant sensory issues in other areas. I can't work in noisy environments because it has to be quiet for me to concentrate.

My need for control and problems with planning my life make it hard to me to navigate endless choice and to make decisions. This makes it hard for me to organise my life without support.

I also have dyscalculia.

(but like many things on the NAS website, there is so much information it's unwieldy and hard to find):

http://www.autism.org.uk/News-and-events/News-from-the-NAS/The-Government-wants-to-hear-your-views.aspx

I must have already done this survey as when I clicked the link I got to the landing page saying "Thank you for completing the survey"!

Can be found here:

http://www.autismplus.org/news/2013/june/have-your-say-review-adult-autism-strategy

https://www.surveymonkey.com/s/AutismStrategyReview

I will also post a new thread about it to ensure lots of people see it.

longman said:

There's supposed to be an opportunity to comment with regard to the next review phase on how local authorities are meeting the Autism Act and "Leading Rewarding and Fulfilling Lives". I think responses or a short questionnaire are wanted by early September. Its an opportunity to air these issues.

I was hoping the NAS Moderators would increase awareness on the Discussion Forum, as who else but the people regularly messaging here have something to say about the continued failure to meet the assurances of the Autism Act. Don't tell me its on the NAS webpages because finding current projects is proving difficult, there being so many things on there with apparently equal weighting.

@Longman: isn't there somewhere this can be found?  I have a lot to say on the matter!

What is so depressing about this is that for me, it's not only for myself, but both my daughters are autistic too, so I dread the struggles they are going to have.

RE: functioning, you might find this very interesting (sorry about the messy formatting):

Credentials of author of this information:

Bill Nason, MS, LLP, Limited License Psychologist, Behavior Specialist 
Here you can find more information about him: 
https://www.facebook.com/autismdiscussionpage/info

www.facebook.com/autismdiscussionpage

Quote:
"Labeling - High and low functioning
We start this process when we seek a diagnosis to begin with. For parents with young children (1-3 years of age) who are seeking a diagnosis, I often recommend that they don't wait for the diagnosis. Forget about the label and begin supporting whatever developmental delays the child is showing. However, the diagnosis of "autism" doesn't say much about the degree of disability. There is too much variability in strengths and skills. When a diagnosis is not descriptive enough, people look for more specific ways to categorize the severity of disability. Not that high and low functioning are that descriptive. 

In the medical field, diagnoses are categorized by symptoms and how much they impact the person's daily "functioning." It is the impact the disability has on the person's "functioning" that drives a lot of the services. For the most part, "high functioning" usually refers to good expressive speech, fair to good receptive understanding, and fair ability to function independently in their daily settings. "Lower functioning" is usually reserved to very limited verbal skills, often nonverbal, lower intellectual abilities, extreme difficulty understanding daily instructions, and needs a lot of assistance in doing their daily routine. 

The confusion among parents and professionals is between "level of functioning" (intellectual ability), and "severity of autism." I know of children who are labeled "high functioning" who have severe autistic traits (very rigid/inflexible thinking, very resistant to change and uncertainty, and meltdown over simple snags in their day.) However, they are considered "high functioning" because they are very verbal, get good grades in school, and can do personal care independently. I have also met children who are considered "low functioning" because they are nonverbal, have difficulty with performing personal care, and difficulty with academics, but who's autism traits are less severe; more flexible in their thinking, handle daily transitions easier, can reference others better, and have fewer meltdowns. So, level of functioning doesn't also correlate with the severity of the autism. Just because a child is labeled “high functioning”, doesn’t mean he doesn’t have severe autism. Many people confuse the two, which can often exclude some from treatment, or lower the expectations for others. 

We also have to be very careful when we equate “lack of verbal skills” with low intellectual abilities. The single largest characteristic used in labeling the child “high vs. low functioning” is the degree of spoken language they have. This also can be very deceiving! Although there is a strong correlation, there are many children who are nonverbal that have much higher cognitive abilities than we first recognize. They simply cannot express it in our customary ways. Once we find them a “voice”, whether through pictures, written words, manual signs, etc, we find they have much stronger cognitive skills, than we had anticipated. It isn’t until we find the right medium of expression do we begin to understand what they truly know. So, our best bet is to always assume “competence” to learn, if the right supports and teaching style can be identified. Don’t get too hung up on “low vs. high functioning” labels.

Quote:Low/High Functioning vs. Severe/Mild Autism
The last post discussed the problem with labeling someone high vs. low functioning in regards to their diagnosis. The problem comes from the fact that a person can be high functioning (verbal, good academic skills, fair to good personal care), but have moderate to severe autism (rigid inflexible thinking, strong sensory issues, poor emotional regulation, delayed processing, and impaired ability to relate with others). Also, a person can be considered low functioning (poor verbal skills, limited academic skills, and minimal personal care skills) but only have mild autism (more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected). 

This appears contradictory at first, but when we look closer we see that these labels actually represent two different dimensions. The first, level of functioning dimension, represents the degree of cognitive functioning, or intellectual disability. The second dimension represents the severity of autism symptoms. You could look at these two dimensions as crisscrossing on perpendicular planes, with the dimension of intellectual abilities (high, moderate, low) running vertically and the dimension of autism symptoms (severe, moderate, and mild) running horizontally. The moderate levels of each dimension meeting at the intersection of the two dimensions. Consequently, you can have people who are very high functioning verbally and intellectually, and be moderately to severely impaired in autism symptoms. This can be confusing for many people who initially see the very bright, verbal child, and not initially see the severity of the autism. Or, assume that the nonverbal child is severely autistic. It is not that easy to diagnosis. 

Making matters even more complicated, is the variable of verbal skills. Although verbal skills are highly correlated with intelligence, it isn’t always the case. Do not assume that the child who is nonverbal has poor intellectual abilities. There are some children who find it difficult to talk due to auditory processing and motor planning difficulties, not lack of cognitive skills. People often assume that the nonverbal child is severely impaired and place lower expectations on them. The same is also true for the child who is very verbal, but most speech is hidden in scripting and echolalia, and appears to have higher cognitive abilities then he actually may have. So, even for the two basic dimensions (intelligence and autism symptoms), the mixing in of verbal abilities can be deceiving. 

The use of labels like high and low functioning, and severely and mildly impaired, are not diagnostic terms, but used more as descriptors when people try and categorize level of impairments. Hopefully the diagnostic criterion in the new DSM will be more descriptive and accurate. Until then, and probably for some time, people will be adding their own descriptive labels to the diagnoses.

That is right on the money Intenseworld, you are describing my daily life too and problems associated with it. The environment out stripping my coping abilities. The high-functioning in the eyes of the world, but actually highly struggling and airing my problems to others in too complex way. My body and mind are at constant battle with the world by stress that is brewing by problem issues, benefits, social contact, simple tasks all adding up to hell.

Longman, quote "The Autism Act has failed us." 

can I add and the government of this country and the NAS.

Well said Intenseworld,

There's supposed to be an opportunity to comment with regard to the next review phase on how local authorities are meeting the Autism Act and "Leading Rewarding and Fulfilling Lives". I think responses or a short questionnaire are wanted by early September. Its an opportunity to air these issues.

I was hoping the NAS Moderators would increase awareness on the Discussion Forum, as who else but the people regularly messaging here have something to say about the continued failure to meet the assurances of the Autism Act. Don't tell me its on the NAS webpages because finding current projects is proving difficult, there being so many things on there with apparently equal weighting.

This high functioning thing really galls me. Let's face it I'm diagnosed as manageable with good coping strategies and I've managed a career, albeit blighted a fair bit, up to retirement. But it definately wasn't easy and while I appreciate I've been luckier than many, I do think it is wrong to assume that because you managed you somehow imagined the aspergers side effects.

At the present most local authorities have such a fast turnover (or career rotation) of staff that there aren't the staff around to help people who need help. And some of the appalling failures to give abler kids real education opportunities, such as only sending them to special schools dedicated to non-verbal or learning disabled pupils, because UK society is to mean to give them a chance. In the 50s and 60s people thought to have autism were taken out of the educaytion system and kept in institutions, with nothing to occupy their minds. We've hardly progressed, and some of the scandalous things going on in this country over the treatment of people on the spectrum merits going before the European Court of Human Rights.

The Autism Act has failed us. 

Yes, you are correct.  I can't offer research about it, but this is what has happened/is happening to me and I have read about it on another AS forum.

There is also something colloquially called "Aspie burnout" which has been referred to by at least one clinician possibly a researcher, so you could search on that.

If you think about it, in diagnostic guidelines for children, it says that (or words to this effect) features/traits of ASC may not become apparent until capacity to cope becomes outstripped by the demands of the environment.  In other words, the passive subtype can use masking and coping skills, perhaps social mimicking etc. so they wouldn't appear autistic, but when the strain becomes too much because of the pressures of the situation they are in, the autistic traits become more obvious and they can't hide it any more.

I have found, that having had a period of prolonged stress having to deal with multiple problematic issues, it is much harder for me to maintain my facade and I am much more prone to rocking, under a situation of very high anxiety I found myself hand-flapping (which I don't think I had done before, or if I had it was rarely and I hadn't realised), all my sensory issues have got noticeably worse and I have headed towards a nervous breakdown.

My executive function has got a lot worse, I zone out more easily after even small social encounters and I can cope with a lot, lot less than I could before and I have even had total thought blankouts in the last few days which has been scary.

I think we just literally build up with existential stress which is never truly released (perhaps unless you have mega regular meltdowns and maybe not even then - I only have mini meltdowns with the occasional bigger one) and then when you get pushed to breaking point by a period of higher stress, your body and mind just seem to make everything harder and more obvious perhaps to make you shut yourself away to recuperate.

I do think social and life demands build up on us over time, it's a zillion times harder for us to exist in this world than it is the neurotypical person, and they would probably say it's hard enough for them.

I have also noticed that my desire for special interests is more intense since this has happened to me too.  Perhaps that is another way the mind/body tries to make you focus on one thing to shut out everything else.

You are not alone.  It is so hard to deal with, and the support for us adults is virtually non-existent.

My local mental health services say that they don't have any autism expertise and cannot gear interventions or therapies towards someone's autism, and any support there is available locally is from charities.  So many GPs don't have a clue about adult autism and will just give you medication.  I feel that the NAS is also failing hugely in supporting adults, more so high-functioning ones.

In fact, just the term "high-functioning" annoys the hell out of me.  It's an utter misnomer.  Just because you are not intellectually impaired and are verbal does not mean the entire rest of your life is not low-functioning and in fact the higher intellect you have the more you analyse and are aware of your difficulties so it's like being trapped inside a shell that doesn't function properly and aware of every last tiny aspect of it, which is like an endless torture.