I have been struggling lately with Aspergers, I feel I have regressed in many fields of operation and I am seeking information that adults can regress. I have read on the net, that regression can be the caused by stress and mistaken for depression in people with autism.
I know regression forms part of the autism model in childhood, but can it also in adulthood ? or is it just stress and lack of coping mechanisms. I feel like everything I knew or trusted is gone ?
And the diagnosticians blindly refuse to budge from their outdated, stereotyped views too.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.
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.
