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Paper Planes

First Published Monday 31st March, 2008.

COPING WITH AUTISM/AS DIAGNOSIS


Learning that your child is autistic/AS can be overwhelming initially. Many parents feel a ‘loss of control’. Many parents are thrown into grief-mode(this may be the case for both neurotypical and non-neurotypical parents). As is often said in various articles, rest assured, your child is still the same child you had prior to diagnosis.  You now can learn how best to help both your child and yourself move forward from this point.


I believe that if parents were informed of the positives of having autism/AS at the point of diagnosis, rather than having the ‘doom and gloom’, ‘tea and sympathy’ approach taken, the road to acceptance would be that much easier on parents. Knowledge is key.


I experienced the ‘doom and gloom’ approach first hand. I diagnosed my youngest son myself, when he was 4yrs, via library books. I took my findings to the local GP, CAMHS team and pediatrician, who agreed. I threw myself into researching, while in grief mode, desperate to understand what path is best taken, what educational approach, what future might lie ahead. On the internet I stumbled upon many doom and gloom stories, but desperately needed to hear some positives, to know that there was hope.


Little did I know that my entire family, extended family and many others, represented those very examples of hope so needed. It’s not at all uncommon for parents to realise that they too are on the spectrum, once their child is diagnosed.


My husband has enjoyed and continues to enjoy an amazing career in computing, has his own company, has a genius IQ and is a wonderful artist. Our eldest son is musically and artistically gifted, attended the Academy of Contemporary Music to obtain an Honours Degree, plays a multitude of instruments, composes and writes lyrics as well as teaching. Our daughter has worked with special needs children while in Secondary School, providing art experiences and is currently studying to become an Educational Psychologist. She is gifted musically, linguistically and artistically. She has traveled extensively, playing flute solo and with a Chinese orchestra. She was interviewed on Chinese TV. She has been through foreign exchanges in both China and Germany. I have worked with babies and children of all ages, including in my own business, for the past 20 years, was considered gifted in my field. All HFA/AS.


The message is “Acceptance not Cure”. Autism itself is not the problem. It can be managed with the right support and firm parenting/guidance. Intellectual deficit is another matter altogether and very much a separate issue to that of autism. Never underestimate your child’s potential. It isn’t easy raising an autistic child, or any child for that matter, but there are guidelines to help which will be covered here and in upcoming articles.


Never lose sight of the fact that you are incredibly crucial, needed and important in your child’s life. You will hopefully find your feet before you know it and become your child’s greatest advocate. You may well become the expert, possibly throwing yourself into learning as much as possible via the internet, support groups both online and off, and literature. Be warned though, that some literature will inevitably take the ‘doom and gloom’/ ‘tea and sympathy’ approach. There are many good books out there and I seek them out and advertise those in the fortnightly newsletter here. There are also many books around by admirable HFA/AS people who had rather terrible experiences in early life, but it’s important to look at the way autistics such as Temple Grandin and others were raised, for a positive picture of how it could and should be.


In order to help you understand(which many Neurotypicals do not or will not)that being autistic/AS is not a terrible experience for us; we do not “suffer” from autism as though it is a painful disease. In fact, quite the opposite for many of us. The following articles are highly recommended:


Jane Meyerding “Thoughts on finding myself differently brained”:

http://mjane.zolaweb.com/diff.html


Jane Meyerding “Why Are We So Unfriendly? Or: Hello, Friend, Now Please Go Away”: http://mjane.zolaweb.com/unf.html


Jim Sinclair “Don’t Mourn For Us”:

http://ani.autistics.org/dont_mourn.html


Temple Grandin’s writings are also recommended.


We are autistic and being autistic, makes perfect sense to us. When we become confused, thereby becoming anxious, it tends to be because we are expected by neurotypicals to operate in their chaotic, personal, emotional world which we are simply not wired to understand. Emotional language and sentiments are often not understood or desired, but if all is kept logical and action-based, we will understand and get on quite happily with you.


Pediatricians have been known to say “He will eventually grow out of it”. Autism is not some transient developmental stage or a disease or sickness from which we recover. Our brains are “wired” differently from neurotypicals. We are especially good at logical and mechanical processes, but have no innate capacity for empathy so we don’t tend to cope well with neurotypical relating and needs.


Autism is a difference in the order of child development due to different neurology, hence the term dis-order. Autism is a life-long difference. We are born autistic and remain so our whole lives, but with appropriate teaching and positive guidance, we can learn to fit and function in society. There are two major variables affecting the prognosis for life of a child born autistic:

  1. 1.  The ability of his family to provide a highly structured, disciplined(note: this does not =spanking) upbringing. Autism must not be an excuse for bad manners/behaviour.

  1. 2.  The innate intellectual capacity of the child. If a child receives strict parenting/social guidance/instruction, then his intellectual capacity is the factor that will hinder or allow him to become increasingly self-sufficient in society.


The higher the IQ, the greater potential for success in life. But, without appropriate social guidance/training in early childhood and beyond, an autistic person with a very high IQ can remain totally dysfunctional.


Provision of a highly structured daily timetable, making each day predictable to the child is essential and also aids in development of language/communication. Anxiety is our dominant emotion. We are extremely anxious people and need predictable structure. Changes can be frightening, but we still need to learn to cope with it and often must be pushed through our fears.


Be careful not to treat your child as an overgrown baby. Demand and expect appropriate social behaviour as she/he develops. Do not raise you voice or shout though, as you will raise his/her anxiety and you will be deemed as ‘unsafe’ and not ‘in control’. You must be in charge in your home. Control is vital. Either we are in control or you are. There is no middle ground on this issue. If you don’t take control, then we will.


Your child may be autistic/AS but he is also an individual. When he/she is feeling safe under your control, you will find a person with a different view of the world, with his/her own unique personality, sense of humour etc, but only if you provide the basic structure.



Further support:


Some helpful coping strategies:

(With thanks to Karen Siff Exkorn)


*Allow Yourself to Process and Accept Your Emotions


Many parents experience a rollercoaster of emotions, often associated with the stages of grieving described by Elizabeth Kubler-Ross. Parents may experience denial(“This is not happening to me”), Anger (“Why me?”), Bargaining (“I vow to be a better person if…”) and Depression (“My life is over”). Ultimately the goal is to reach the stage of Acceptance.


If you don’t allow yourself to acknowledge and respect your feelings, you may find yourself stuck in one of the stages of grief. Many parents do just that. It’s not uncommon for parents to experience different emotional reactions for differing amounts of time. Importantly, you mustn’t judge yourself harshly for having negative or overwhelming feelings. Parents who find themselves feeling depressed are often told it’s perfectly natural, but if it’s consuming you to the point where you are unable to function effectively to help your child, then professional assistance and support is at hand.


*Know that Men and Women Have Different Emotional Responses


Research shows that mothers and fathers respond differently to a child’s diagnosis. Overall, mothers seem to experience the impact of a child’s diagnosis more intensely than fathers(Sharpley, Bitsika and Efremidid (1997); Seltzer (2001). Mothers respond with more depression and guilt to a child’s diagnosis than fathers (Gray 2003). Their guilt is often manifested through expressions of regret: “If only I had eaten a healthier diet during my pregnancy” or “I should have noticed my child’s symptoms earlier.” Mothers also are more open to venting their feelings about the diagnosis, whereas fathers tend to suppress their emotions.


As you can imagine, the gender differences in responses can cause tremendous stress on a marriage. Communication can break down as couples express emotions differently or not at all.


Just as it’s important not to judge your own emotional state, it’s important not to judge your spouse’s. For some, a ‘couple’s therapist’ has been beneficial, while others manage to sort through issues on their own, over time.


*Go into action mode to help your child. Be proactive rather than reactive. Try to separate your heart from your head. This is the easiest and most effective way to deal with helping your child receive any extra help he/she may need(ie speech therapy, OT etc). Be aware of so-called ‘treatments’ that can be more harm than good(eg chelation and a multitude of others) and those whose only interest is making money from vulnerable parents.


The ability to make intelligent, informed decisions on your child’s behalf is based on your ability to actively pursue the right information. There is alot of information out there, and it’s important to focus on what is best in terms of your individual child’s needs. Read books, speak with professionals – autistic people(others parents). Be proactive.


*Give yourself a break.


After your child is diagnosed, helping him/her can become the primary focus of your life. Remember – you must help yourself in order to help your child. You must carve out time for yourself, even if initially it’s only a few minutes a day to take a walk, meet a friend for lunch, or do something that’s unrelated to autism. Taking breaks, however difficult, allows you to re-energize and take control of your life. Taking care of yourself helps you to be a better parent.


Finally in closing, please remember:


“To want a so-called “normal” life for one’s child is actually a part of loving that child. The good parent wants his or her youngster to grow up happy, loved, feeling confident, and to be able to live a fulfilling life. Having autism does not destroy those potentials; it only alters their course. It changes how things must be accomplished. It creates a fascinating, complex individual who stands out and is remembered, even for little things. Instead of trying to push a “normal” life upon a person with Autism, the goal should be re-evaluated. Those who are autistic will always be autistic. They will have unusual behaviors and distinctly different thought patterns. They will have their personal routines and rituals. They will always exist apart from the regular flow of life. This is a blessing and a type of freedom.”


Enjoy your child and remember, you are not alone.




One Response to “Advice/Support For Parents Of Newly Diagnosed Children”

  1. pasaila Says:

    ALL information was useful.

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