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A REJOINDER: To “Does a late diagnosis of Autism affect self-esteem?

10 Sep
TITLE: WELCOMING THE LIGHT
Photo by: Bing C. Veloso, Location: Las Pinas City, Philippines
Photo Title: WELCOMING THE LIGHT
Photo by: Bing C. Veloso, Location: Las Pinas City, Philippines, Date: September 10, 2021

I am Bing Veloso, an adult autistic.

I am honored that Dr. Covey asked me to write a rejoinder to her beautiful article on adult autistics.

To start off, I am representing only a small percentage of the autism spectrum, the ones who are invisible because we look “normal”. We are the ones who usually get the comments such as: “Oh! You don’t look autistic!”; “Are you sure? You may just be seeking attention! Get hold of yourself!” 

We are called the “high functioning autistics”, formerly diagnosed by professionals as those with Aspergers. The research mentioned by Dr. Covey seemed to be about our segment of the spectrum. Being made more “visible” through this article and the said research gives me hope that we may indeed be able to work on helping each other through the mystery of autism.

This leads us to the question: What kind of accommodation do invisible adult autistics need to be able to have a quality of life?

It is helpful that Dr. Covey shared that the results of the said research showed that self-esteem seemed to be higher among late diagnosed autistics. Being diagnosed at the age of 51 years old (I am now 53 years old), I can say that most of my life, my family, friends, colleagues, and whoever has known me, were clueless about something we all could not put our finger on – that which made me different and was causing me difficulties in relationships. Thus, navigating my way through a much-hoped-for fruitful career and even basic family relationships were intensely challenging. I have lost many jobs and relationships even if I tried and tried and tried my best. My life before diagnosis was like going through a labyrinth with so many dead ends.

Thus, it is my opinion, that all these attempts have helped me develop better self-esteem (but not good enough to be “normal” or be “cured of autism”. This may call for another rejoinder). One advantage I had was having the elbow room and freedom not to be put in the “autistic box” by others, whether professionals or family or friends or colleagues.

Early diagnosed autistics do not have this choice. This does not mean though those late-diagnosed ones have it easy. The issue of abandonment is strong because people just do not know how to handle us nor do we know how to handle ourselves. Maybe that is also the reason for the strong advocacy of “autism pride” among late diagnosed autistics. It is to get back those years of wandering in the deserts of cluelessness.

Another thing worth sharing is a distinct character or experience observed among late-diagnosed autistics. The emotional rejection of being diagnosed as autistic is not so prominent. In fact, instead of being unhappy about being diagnosed as autistic, we “throw parties” and celebrate.  It is because we have been self-diagnosing for a long time and finally, the pieces of the puzzle fit and make sense. The exhaustion of the search for answers and battling the inner unknown has come to an end, so to speak.  Indeed, a formal diagnosis is a confirmation worth celebrating. We even kid ourselves about this in our facebook groups (yes, we do have fb groups!) that of all mental conditions, autistics may be the only ones who celebrate when diagnosed formally.

Yet, formal diagnosis is still elusive and rare for those who think they need to be diagnosed of autism. It also does not mean that all problems are solved and we can now live happily ever after. It is only the start of another phase wherein appropriate contact and support are needed. This time, it is intentional and better directed. We need to help each other and also to have family, friends, and professionals who will walk with us in navigating through the remaining years of our lives, and hopefully, to regain the lost years.

In this, I am hoping that AAAP may be of help. The appropriate support from pre-diagnosis to post-diagnosis may be explored and offered. Among them can be helping adult autistics have access to formal diagnosis, conducting studies in profiling adult autistics so as to identify appropriate support, providing services to “regain the lost years” in terms of education and training opportunities, work opportunities, and socialization opportunities.

Presently, I have found my special interest in sign language. I find it therapeutic. I have also found new friends and families in the Deaf Community who have been teaching me to navigate from being a person with disabilities to becoming a person with different abilities. I also found out that it may be possible to make this into a career by helping out other autistics learn sign language especially those needing career opportunities. A special prayer I have is for the non-verbal/non-speaking autistics and their families. I am hoping that we, as an autistic community, be able to embrace sign language as a tool/skill for communicating with each other. This may provide a ray of hope for them.

To end, I would like to thank Dr. Covey who has been providing me with much-needed contact and support. She has been an amazing mentor and Tita both in my victories and challenges. With much hope, I pray that there will be more Dr. Lirio Covey’s in the world. Then, we will have more included, accommodated, and happier autistics and autistic families.

September 10, 2021
Las Pinas City, Philippines

DOES LATE DIAGNOSIS OF AUTISM AFFECT SELF-ESTEEM?

1 Sep

SELF-ESTEEM WHEN AUTISM IS DIAGNOSED IN ADULTHOOD

By Lirio S. Covey, Ph.D.

Autism is described formally as a lhife-long disorder. Early understanding and knowledge about autism focused on the condition as seen in children but not so much on autism as experienced by adults. Recent years have seen a growing recognition that autism in adults occurs as well. In fact, because there aRe many more autistic persons older than 18 years of age than younger, it follows that there are more adults than children and adolescents who are autistic.

During the past several months, there have been notably more inquiries than in the past received by AAAP regarding autism diagnosed in adulthood. A recent article published in the journal, “Frontiers in Psychology ”, relates to that recent increased attention.

The study was conducted in the United Kingdom, participants were persons who had previously received an autism diagnosis only during their adult years who responded to an online survey. This convenience sample consisted of 151 persons; most were female (77.6%) and more than 50% had attended college or better were White British. The main questions asked in relation to the autism diagnosis obtained as adults concerned their self-esteem, mental wellbeing, and the concept of autism pride. Autism pride was conceived as reflecting pride in autism being a part of oneself and its converse, feelings of dissatisfaction with being autistic.

The researchers found that, among the sample of adult autistics, diagnostic timing (years since the diagnosis) was not correlated with mental wellbeing but was correlated with self-esteem and autism pride. That is, the longer the time from being diagnosed as autistic, the better the self-esteem; on the other hand, lesser years since the time of diagnosis was correlated with greater dissatisfaction with being autistic.

Qualitative research from 54 of the original 151 participants were asked the question of how knowing the autism diagnosis had impacted their thoughts and feelings about themselves. What became apparent was that post-diagnosis, a dynamic process of attitudinal adjustment occurred. Characteristically, the process began with an emotional rejection of the diagnosis brought on by awareness of the stigma associated with autism and frustration that it had taken long to recognize the autism, followed by unfolding self-knowledge and, in time, a new appreciation of their differences from others, and eventual self-acceptance. Contact and support from others during this process exerted beneficial effects on developing self-esteem.

In other words, that the length of time from the autism diagnosis was a predictor of self-esteem indicates that a learning process takes place over time wherein upon learning the diagnosis, the newly diagnosed autistic person begins a self-exploration, understands how and why they are different from others, and can come to a growing appreciation of their positive autistic qualities, even if once presumed by themselves or others as deficits.

Notable limitations of the study that prevent generalization of the findings to other autistics receiving a late diagnosis are: 1) the information was obtained from a convenience and specialized sample – mostly female, well-educated, and White British, and 2) because the data obtained referred to only one time point in the participants’ life, only a presumptive rather than a causal effect of diagnostic timing on self-esteem and autism pride can be inferred.

What also remains to be known is whether, had the autism not been diagnosed earlier or at all, would the ensuing years have also brought on the increase in self-esteem, that is, as a natural effect of the person’s maturation, that is without the autism-related response. What is also of interest, since delayed diagnosis among autistic persons is not uncommon, is that, as suggested by the study findings, obtaining the autism diagnosis later in life can increase rather than decrease self-esteem.

Reference: Kirsten Corden, Rebecca Brewer, Eilidh Cage. “Personal Identity After an Autism Diagnosis: Relationships with Self-Esteem, Mental Wellbeing, and Diagnostic Timing. Frontier in Psychology, July, 2021.

Do autistic persons show what they mean?

1 Sep

How facially expressive are persons with autism?

By Lirio S. Covey, Ph.D.

Facial expression is an important means of communication. Being able to accurately express inner emotion is critical in conducting meaningful social interactions.

A recent article that compiled and analyzed findings from 39 well conducted research studies found that persons with Autism Spectrum Disorder (ASD) are less expressive overall than persons without ASD.

In addition, their facial expressions were found to be less consistent or appropriate to the social context. This characteristic, the authors of the study suggest, likely contributes to the deficits of persons with autism in effecting reciprocal social interactions.

Difficulty in social interaction and communication is one of the two core symptoms of Autism Spectrum Disorder (Repetitive, compulsive behaviors and resistance to change is the other).

Variations in the extent and degree of this deficit among different autistic persons were noted in the research. When compared with non-ASD persons these differences were smaller with older age and higher intellectual functioning. An implication of this finding is that more knowledge and familiarity with social practices and norms could improve the deficit in appropriate and meaningful facial expression. Such familiarity could come with greater socialization and experiences in variable social contexts and experiences in wider social settings.

This would imply that greater socialization and experiences with persons without ASD, an outcome of inclusion practices in employment, recreational, and educational settings, could ameliorate, over time, the lack of social competencies notable in persons with ASD.

Reference: Facial Expression production in Autism: a Meta-analysis. Dominic A. Trevisan

Maureen Hoskyn, Elina Birminghamm Autism Research, December 2018

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