Most parents are unprepared for the shock and confusion that typically follows an autism diagnosis. Sure, they know something is wrong with their child. And yes, pervasive developmental disorder (PDD) is a strong possibility. However, when the autistic label becomes official, getting their hopes and expectations ripped away from them can often be more than they are ready to accept.
Dealing with the reality that your child has special needs, that he is not typical, and will never fulfill the dreams you had for him, can initially feel devastating. But that’s okay. It’s perfectly normal to feel sadness, loss, and even anger. Trouble only begins when you allow denial or loneliness to interfere with your responsibilities as a parent. So if you're having trouble coping with the possibility of having a special needs child, here’s how to push through the negativity and get on with the job of helping your child reach his full potential.
Take the Time You Need to Grieve
When faced with the distress of an autism diagnosis, the loss of expectations, the fears, and the hard work ahead, take the time you need to grieve. It’s essential that you completely work through that painful process in order to become the best advocate for your child. While occupational therapists, language and speech pathologists, psychologists, and neurologists all play important roles in your child’s development, it’s you, as a parent, who decides which therapies to pursue – and when.
The sense of loss is real, so don’t play it down, but you do need to allow yourself the space to travel through the six steps of grief:
- shock, panic, and confusion
- sadness, grief, and mourning
- anger and resentment
- denial
- loneliness and isolation
- acceptance
It is only through addressing each of these emotional responses and coming to terms with your child’s disorder, that you can find the strength to stand up and accept the challenge known as autism.
A Diagnosis of Autism Allows Treatment to Begin
Many individuals fear labels, particularly the parents of children with special needs. However, a label is not a jail sentence. Nor is the label intended to last forever. In fact, according to author Bryna Siegal in the book The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorder, the label of autism is good news. “The ‘label’ is important,” Siegal writes, “insofar as it is a shorthand for a treatment plan.” Better yet, “it’s a ticket to services.”
While it is human nature to zero in on why your child differs from a typical child, pushing through the shock, grief, and denial comes from focusing on his capabilities, rather than weaknesses. A diagnosis of autism tells you which areas of development are his greatest challenges. That’s because autism is divided into a spectrum of different symptoms and characteristics. By discovering where your child sits on that spectrum, and taking a good look at his personality quirks and temperament issues, parents – along with the help of professionals – can use the child’s strengths to help compensate for his weaknesses.
Early Intervention is Best
A diagnosis is “the mandatory first step of developing a plan for treating a child’s autism or PDD,” Siegal writes. Up to that point, at best, the child simply gets shuffled from one medical professional to another. There’s no specific help for what’s actually wrong. No next step, even though “most brain growth, and most fundamental aspects of learning, takes place in the first six years of life.”
Many pediatricians and family practice physicians like to take a “let’s wait and see” approach. For that reason, autism is not always considered an option – at least, not until the child is older and continues to experience developmental delay. However, autism experts like Susan Dodd agree with Siegal. In her book Understanding Autism, Dodd writes, “Once parents have had time to digest the fact that their child has autism, they can then work out what to do next.”
Until autism spectrum disorder is firmly diagnosed, intervention services and an individualized autistic treatment plan is not available to the child.
Understanding Autism
Most individuals, and especially the parents of newly-diagnosed autistic children, do not understand what autism is. That’s why it’s so easy to slip into, and get stuck in denial. Although refusing to accept what is happening is a typical way to cope with the diagnosis, it also prevents a parent from being able to understand their special needs child.
Autism is not a disease. It is not an illness. And it most certainly is not mental retardation. It is a group of symptoms and characteristics that can improve, change, or even disappear when help is provided. The label of autistic disorder does not mean there is no hope for partial or full recovery. There is always hope, and there is always room for improvement – room for your child to reach “his” full potential.
But that doesn’t mean you should spend your time trying to foretell your child’s future possibilities. While your autistic child is more capable than most people will give him credit for, and his sensory issues, individual problems, and personality quirks can be overcome, or lessened, always remember that you are not a victim – and neither is your family.
How to Cope with Autism Spectrum Disorders
Autism is a challenging spectrum disorder, which at first can leave you feeling helpless and overwhelmed. So initially, take the time you need to work through those feelings. Start by moving your focus away from what your child can’t do, or what you fear he might not be able to do, and concentrate on what he can. Look at his strengths. It’s not that your child can’t learn, but that his brain wiring causes him to learn differently than typical children.
The challenge will be figuring out how he learns, and coming to terms with his way of understanding and experiencing the world. While you can’t actually get inside his head, you can accept him fully and unconditionally for who and what he is. That requires you to address “his” needs, and the impact autism has on them. It requires you to seek out and learn everything you can about the disorder so you can make informed decisions about what to do next.
Although your life hasn’t turned out the way you expected, raising a special needs child can bring more joy and happiness than you ever imagined.
Sources
- Autism Autoimmunity Project, “How to Cope with an Autism Diagnosis” (accessed August 5, 2011).
- Autism Speaks, “Autism & Your Family” (accessed August 5, 2011).
- Dodd, Susan, BA, DipEd (Med), Understanding Autism, Elsevier, December 2004.
- Jurgens-Shimek, Julie, Autism is a Four Letter Word: Love: Michael’s Journey Continues, AuthorHouse, March 2009.
- Siegal, Bryna, Ph.D., The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders, Oxford University Press, January 1998.
Disclaimer: The information contained in this article is for educational purposes only and should not be used for diagnosis or to guide treatment without the opinion of a health professional. Any reader who is concerned about his or her child’s health should contact a licensed medical professional for advice.
Vickie Ewell - Vickie has worked with autistic individuals for 9 years. She has celiac disease and specializes in gfcf living.
