A Diagnosis of Autism: Making Adjustments to Manage Feelings of Loss and Grief
By
Having a child with a disability is every parent’s nightmare. Once you have heard the words, “Your child has Autism.” the disappointment, anger and the feeling of isolation can leave you in shock. How long you remain there will be determined by how well you deal with your emotions.
Disappointment, anger and self-pity are natural feelings to have when you first receive a diagnosis of Autism. Giving yourself permission to experience these emotions and then letting them go as best as you can will help you focus all your energy on becoming the best person for the job that has been assigned to you.
GRIEF is a powerful emotion and is the most common hurdle that keeps many parents from moving forward. It is extremely important to allow your self to go through and experience the stages of grief, which include denial, anger, bargaining and finally acceptance. Dealing with these emotions in a healthy manner will transform you into a most effective advocate – one that will see the way clearly to maximize your child’s greatest potential.
Some parents do not like to use the words loss or grief as it relates to Autism because it implies grieving your child. This grieving process is not about mourning your child but more about grieving the loss of a future you had HOPED for.
You HAVE experienced a loss, a LOSS of the dream you had for yourself, your child and your family – a disappointment about an idealized future. This means that certain adjustments need to be made to the vision you held for your child and family. As with any loss, parents of children diagnosed with Autism need to find a way to make peace with the diagnosis in order to move forward.
Just remember the dream you have for your family’s future can still be positive, it is just going to be different. In spite of the new category the medical profession has placed your child into, the destination can still be the same but the journey to get there is going to take a unique path.
Important things to keep in mind:
1) You have to get past the hurt, disappointment, anger, and distress. Too much negative energy will only drain you and make you less available to your child.
2) Dealing with these emotions is not only OK; it’s mandatory. If you really want to help your child, this can do more for your child than any treatment out there.
3) Keep in mind that this is a process you have to keep working at. You may feel as if you have resolved your grief but there will be days when it returns. Expect it, have a plan to deal with it so you can keep putting one foot in front of the other.
If you can’t seem to move forward and days like this turn into weeks, you may be experiencing another emotional block. The best way to shorten its course is to find someone that will listen and help you process your feelings in a non-judgmental way.
This is when you have to call on someone from your support team! This could be a trusted friend – a supportive objective someone – or a professional such as a parent coach or a therapist.
Remember, this diagnosis does not change your child; but it does change how you need to work with your child. Don’t waste your time and energy being angry with yourself or the doctors, it does your child no good to linger in a negative state. Forget the what-ifs – look ahead, make the necessary adjustments and set the bar high for everyone, including your child.
The most important thing I tell parents is “Don’t focus on the label – focus on finding the best way to connect with the wonderfully unique child you have before you.” This new label may help you acquire insurance to cover therapies but it can also keep you focused on the negative so pay little attention to it. Instead focus your energy on connecting to your child’s world with thoughtful intention because it will open the door for her to enter into your world, the one she has to find her way to live in.
Every child has challenges and the challenges your child is faced with just happens to have a particular name called ‘Autism’ or ‘PDD-NOS’ or ‘Aspergers’ or ‘ASD’ or . . . . Don’t let a ‘name’ cover up the amazing potential that lies within your child.
It may help to remember that your child isn’t any different now then he was when you didn’t know he had autism. You know he’s the same child you’ve loved since birth. So I urge you to focus on uncovering his abilities, not treating his disabilities, in order to change possibilities!
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If you would like to chat about ways to address any lingering emotions that may be preventing you from moving forward in a positive way, please pick up the phone and take advantage of my complimentary 15-minute phone consultation. http://parentcoachingforautism.com/free-consultation/ I’m always here to listen and help.
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[...] A Diagnosis of Autism: Making Adjustments to Manage Feelings of Loss and Grief [...]
Connie,
Well said! I too have supported parents for many years as we deal with the very complicated emotions surrounding our child’s diagnosis. I am very glad that you noted that the emotions can AND WILL surface again and again. I think of it as a grief cycle rather than a process. The good news is that it gets easier and easier to deal with the emotional ups and downs as you go on. Or, it should!! If, however, you still find yourself struggling then you might be living more in denial and that is also a very negative place. (I tell friends that every now and again I “vacation” in denial, just until I’m ready to again take the plunge into life!)
Keep up the good work,
Merryn Affleck
Thank you for the affirmation Merryn and all the great work you do as well.
Connie,
You are right on point with regards to the grief and loss experience parents face when their child is given a diagnosis of Autism (or any diagnosis of a disability or illness for that matter). We as a society don’t like to talk about grief but that is in fact what parents and loved ones are feeling – the sooner we are truthful about that emotion, the sooner we can adjust to the reality of what the diagnosis really means.
The truth is that feeling grief is a NORMAL and NATURAL reaction but we have been socialized to deal with our loss experiences in unnatural ways. There are many myths that society has created surrounding grief and loss experiences, six of which are: grieve alone (isolation), be strong, don’t feel bad, replace the loss, keep busy, and time heals.
When a child is given a diagnosis such as Autism, it is unhelpful and counterproductive for the family to isolate themselves from society and each other, because there is significant value in the experiences of others who have walked this path. Being strong doesn’t allow you to be truthful to what you are feeling. You can’t “be strong” if you can’t be truthful and therefore the message is unhelpful and damaging. Somehow we’ve received the message that feeling bad IS bad and that couldn’t be further from the truth. Feeling bad is normal and it is true that a diagnosis of this kind is going to make you feel bad. We’ve been taught over our lifetime to replace our losses… if something’s broken, we go out and get a new one – the internal struggle is that on some level you may feel your child is “broken” and you just can’t go out and get a new one which is exactly the incorrect message that has been ingrained in us from childhood. Keeping busy is simply a form of distraction. Keeping busy is like putting a band-aid on cut that requires stitches. It’s a short-term fix that ultimately just doesn’t work. Finally, time alone doesn’t “heal”, it’s the actions you take to adjust to the changes in your life that help you COMPLETE your relationship to the loss.
Yes parents need to “find a way” to adjust to and accept the hand that has been dealt, but I believe most would if they knew what “the way” was. One way for certain is the Grief Recovery Method® which allows parents and loved ones to become emotionally stronger and uncover a more solid foundation from which to stand on so that they can process and accept the “loss” but more importantly see the beauty in the gift that is their child who just happens to be Autistic. It offers the opportunity for a more authentic Life THROUGH Loss™.
You provide a wonderful, much needed service to many families whose life journey brings them to the Autism experience.
Warmly,
Kandy Magnotti
Kandy,
I so appreciate your wonderful insight and the quick summary about the myths we hold on to in our society about grief and loss. Many of us go through life not knowing any different unless we have been enlightened otherwise by someone like you. You sound as if you have a lot more to share that would be beneficial to parents who experience an ordeal such as this. Would you mind sharing your website if you have one, or any other venues, such as Facebook or Twitter, so we could learn more about you and the Grief Recovery Method®. Please feel free to post any contact information you might have and thank you so much for taking the time to comment.
Smiles,
Connie
Hi Connie,
It would be my pleasure!
My website http://www.lifethroughloss.com provides a lot of information about the grief experience and most importantly, the path to recovery. I post insightful articles on my blog http://www.lifethroughloss.com/blogarticles.html that I know will provide education and comfort to the parents you work with. I can also be found on Facebook at http://www.facebook.com/lifethroughloss as well as Twitter at http://www.twitter.com/lifethroughloss. I can be emailed directly at lifethroughloss@yahoo.com. My phone number is 941.807.7431.
Adjusting to the reality of a medical diagnosis and all that comes with it is not easy… but it can be done with grace, realistic hope, authenticity, and a renewed sense of self.
Life THROUGH Loss™ can help you get there…
Warmly,
Kandy Magnotti
Certified Grief Recovery Specialist
Grief and Loss Facilitator
Certified Clinical Trauma Professional
Kandy,
Thank you for providing your contact information about such an important service!
Connie, thanks for a great article on an important subject. Unfortunately, because grief is not something that is openly discussed in most American families, many parents become confused or ashamed of their feelings of loss and sorrow. I recently wrote in my blog about coping skills and everyday grief from a parent’s perspective: http://blog.friendshipcircle.org/2012/03/15/special-needs-parents-how-to-cope-with-grief/
Karen, I appreciate your positive feedback and I love your blogpost – thank you for sharing. I think it is so powerful when parents can share their stories of how they coped with being the parent of a child with special needs with other parents in the same boat. Your post is an inspiration and will help others come to terms with “the person I was (they are) supposed to be all along.”