My first professional blog attempt

Welcome All!

The objective of this blog is to advocate, educate and inform my readers by providing an 'insiders view' to the screening, assessment and interventions for adults with Asperger's Syndrome (AS). Timely articles and postings will include topics such as screening, evaluation, self-manangement techniques, specific differences, evidence-based interventions (EBI), Alternative Behavioural Analyses (ABA) and much more.

As a trained counsellor, I was recently diagnosed AS and so this blog also dares to share part of my own journey through assessment & adjustment -- and eventually seeing the issue "with new eyes"; and other salient issues that might affect those struggling to come to grips with their diagnosis (especially those diagnosed later in life, like I was).

Created as a practical and useful resource, this blog will attempt to offer its visitors essential information -- hopefully useful for informing other counsellors & mental health professionals, advocates, barristers, Special Ed instructors, and, most of all, for those NT adults with "Spectrumite" partners.

Tuesday, 20 December 2011

Static Bubbles: The Myths of Functioning Labels

Corina poses an excellent argument while pondering the notion of "how we AS persons define and use our own terminology" which is commonplace... in particular the language of "high vs. low functioning"... have a squiz at her ideas!


The Myths of Functioning Labels

Autism Community Use of Language
by Corina Becker
In the Autism communities, the terms “high functioning” and “low functioning” are used quite a lot. However, when asked, the communities are unable to agree upon defining criteria for each. This has led me to look for a clinical description for each, specifically for Autism. However, I was only able to find the Global Assessment of Functioning (GAF), which is not Autism specific but can be applied to all diagnosis in the DSM-IV-TR. 

The GAF does not use the terms “high” or “low” functioning, but uses a numeric scale from 0 to 100, based on a person's overall and cumulative rating in social, occupational, academic and psychological functioning. While it does include communication, it is not completely based on one's ability to speak. 

I recall that some of the community definitions used speaking and some used IQ as the defining criteria for functioning. However, there seems to be problems with that. For one, there are critics of IQ test results who say that IQ tests are only for measuring learning, not for assessing ability. Researchers have been critical of IQ tests towards Autistics since a lot of tests are language and cultural reference specific, and results are inaccurate. As for using speaking as a defining criteria, it has been noted that the ability to speak does not indicate ability to communicate and articulate, nor does it accurately represent abilities in other functioning areas.

As I found there is a lack of a clinical definition of Autism functioning levels based on criteria given by the communities, I can only conclude that it does not actually exist. If it does exist, it in inaccessible to the general public, and by extension, Autistic individuals, their caregivers and family members.

So I have to ask, why are we using terms that have no official definition as a part of Autism diagnosis? Yes, it can be used as a descriptor for a person at that given moment, but the community definition is inconsistent and subjectively based on each person's experiences. This causes a lot of wrong impressions to be made about Autistic people, which can lead to belittling of people's experiences and difficulties as well as false assumptions of people's ability to grow and develop throughout life. It also has the effect of treating Autistic people as things that are not human and have qualities that need to be assessed, judged and graded in order to be of any value. This is rather dehumanizing of Autistics.

What might be needed is not just a consistent definition of Functionality with High/Low descriptor tags, but an understanding of what a Functioning score means. We can use the GAF and divide it evenly into High and Low Functioning with a 50/50 split. However, this should not belittle the differences and disabilities of those considered High-functioning, since it takes a very high rating to be considered symptom-free. Looking at the criteria, there are very few people off the spectrum who can be considered that high-functioning.

Furthermore, I have seen the term High-functioning used to ignore any reference that an Autistic has difficulties and to dismiss their experiences. I have seen High/Low-functioning used as if the terms were static statements of ability, that once given, are permanent. Such usage is contrary to the realities of Autism. 
Autism is a developmental disorder, which means that while development milestones are delayed or missed all together, skills do grow and are learned. We do not live in static bubbles, but interact with our environment, respond to events and situations.

As such, a functioning rating is not a fixed fact, but rather an observation on one's social, occupational, academic and psychological abilities at the time of the assessment. This rating can change, depending on many factors such as medication, support services, various therapies and accommodations, as well as from personal growth and development. It is based on information and details that are extremely personal, and to make generalizations on it is at least very rude and hurtful to that person.

Since the information used to assess a functioning rating is personal, an actual rating should be private and disclosing it should not be a requirement for participation within the Autism/Autistic communities. As a supportive community, it is inappropriate to make judgements and assumptions on the way a person presents, and on a person's functioning rating, should they choose to disclose. We also should not be using such changeable labels to discredit others. In fact, we should move beyond the labels and focus on treating Autistics as people, especially when they are willing to share their experiences and assist in whatever way possible, under their own choice, and in our mutual efforts towards self-advocacy. It is one thing to keep in mind a person's diagnosis, but another to make assumptions on confidential and private details of their lives.

If a person chooses not to disclose, that is their choice and as a community, we should respect that and not imply that they are less in worth. Instead, we should remain open and treat them no less or any different than before. As a community, we should be supportive of all our members.

Marital Stress and Parenting Aspergers Children: 20 Tips for Spouses

 My wife and I have two AS kids and are finding marital relations severley strained at times!  She often says she feels like the "meat in the sandwich" and struggles to keep her "head above water" in everyday life situations.  Finances, lack of social life (as I'm an ASpie too) and differences in our 'beliefs' of how our kids should be (a) educated, and (b) parented pose the greatest challenges for us both.

I came across this article recently which assisted me in prioritizing where my energies could be directed in future, in raising our family.  I hope these pointers might help others in similar & beneficial ways...

Being a mother [or ]to an Aspergers youngster changes your lives and identity forever. There is a balancing act between (a) caring for the needs of your “special needs” youngster and (b) putting time and effort into the maintenance and growth of yourself and your marriage.  This is true of all marriages, whether the chuildren or NT or AS, but with Aspergers youngsters the challenge is even greater!

The kind of stress that raising an Aspergers youngster often entails can affect relationships at their weakest points. According to recent statistics, 47% of first marriages fail and 57% of all marriages end in divorce. Although the findings are inconsistent, there is general consensus among professionals that, while the divorce rates are comparable, there appears to be more reported marital distress among families of kids with special needs.

Some areas that will be impacted in your marriage are:
  • Finances
  • Future planning
  • Parenting style
  • Recreation
  • Self-esteem
  • Sexuality
  • Social life
  • Spirituality

Moms and dads of Aspergers kids often face a life very different from what they had originally imagined. The needs of Aspergers kids are often complex and illusive. Searching to find the cause of the youngster’s developmental problems - and the best treatment for it - can be a long hard journey. When the diagnosis of Aspergers is made, powerful emotions may surface - and may put the marriage on trial.

How can couples understand each other in the wake of such a challenge?

Challenging life events can serve as catalysts for change. Some families disintegrate while others thrive despite their hardships. Parents can emerge from crisis revitalized and enriched. Hope for relationships really can spring from the crises parents experience when their youngster has an Autism Spectrum Disorder.

If you and your spouse are parenting an Aspergers youngster, here are some suggestions to help your relationship:

1. A major key to coping with stress and change is to try to accept it and to regularly express your feelings and thoughts to one another. Of course a diagnosis of Aspergers does not destroy your marriage – but it will shift the balance in your marital relationship. You and your partner will be adjusting in different ways, and often at a difference pace. Sometimes your partner will want to talk about the situation, and then other times may need time alone.

2. Allow friends and family to provide extra support, or seek professional help if your marriage is in jeopardy.

3. Although your marriage is forever changed, the change doesn't have to be negative. Many partners share their sense of joy, awe and thankfulness as they speak about their special youngster. Because they were able to communicate and openly share with one another, their marriage is also enriched.

4. Be patient with one another.

5. Celebrate each milestone.

6. When an individual is in pain, he/she may withdraw or become frustrated and angry. It’s hard to talk about something we have no power to change or fix. At times the reactions of partners can become polarized or opposite (e.g., one partner may notice problems in the Aspergers youngster and tend to worry and feel negative, while the other partner holds hope and optimism that - in time - everything will be fine). Try to consider all of your feelings toward your youngster - both positive and negative - and discuss issues in ways that will help both of you feel understood and find solutions to problems.

7. Develop a strong family support network.

8. Look at what professionals believe make a strong family. The list includes communication, listening, affirming, respecting, trusting, having fun and a sense of humor, and knowing when to seek help. These strengths need to be worked on in a couple's marriage relationship, too.

9. When possible share the responsibilities at home by working together on chores, childcare, and education. It is helpful when partners both work to learn about their youngster’s disorder, prepare for and attend IEP meetings, etc. Get involved in the special needs community if you can. There’s so much to manage everyday that reaching out to your spouse, relatives or friends can help lessen the burden.

10. Reaffirm your marriage commitment to one another.

11. Realize that Aspergers children will disrupt the course of your marriage now and then. It simply comes with the territory, but can be easily worked out.

12. Remember to take care of your relationship. Make time for the two of you to be alone every day – even if it is a walk around the block. Some time away together is important also.

13. Sometimes a mental health professional can be helpful to you in understanding the needs of Aspergers kids, yourself, and your marriage. Some parents are reluctant to take this step, but if it becomes hard to function from day to day, this kind of help may be in order. Just as you would consult more than one specialist for your Aspie if necessary, do likewise for yourself. If your spouse is too discouraged, then start by yourself. Sometimes a change in one spouse changes the chemistry of the situation for the better.

14. Sort out what is important and what isn't important to the two of you. Really look at your values and your hopes and dreams for your life together. Discuss what you can – and cannot - accomplish.

15. Your Aspergers youngster has a condition that may require lots of care and supervision in the early years. In the struggle to advocate for your kid’s needs, your own needs as a parent and as spouse may get lost. Many spouses stop focusing on their marriage, but this never helps. As hard as it may sound at first, start to think about taking care of yourself and adding some fun and enjoyment into your life, even though it can take a long time for this to feel okay.

16. Take time to pursue the things that renew you as individuals.

17. Talk openly about problems and issues when they occur.

18. Together, learn all you can about your youngster's disorder.

19. Family life can be a test of love and resilience, so taking good notes and working to understand each other's wants and needs are vital to the success and survival of an intimate relationship. Life has veered-off a bit from what you had expected it to be. Try not to blame each other for the situation. It takes time to sort this stuff out. Be kind to yourself and each other when the going gets rough.

20. Prayer and meditation are useful tools for many parents of special needs children.