Diagnosis, What Now?

What You May Experience:

No one is ever prepared for a diagnosis of Autism Spectrum Disorder. Although it may have answered some of your questions as to why your child’s development has been different to other children, it may still be a shock to you.

You may experience a range of emotions, which may follow the following order (though you may find you revisit any of the stages at various times):

 

  • Shock
    • You may feel stunned or confused
    • You may feel overwhelmed and unable to accept the diagnosis, and you may find yourself wanting to seek a second opinion

 

  • Sadness or Grief
    • You may mourn the loss of some of your hopes or dreams you may have had for your child
    • It is OKAY to cry

 

  • Anger
    • This is a natural part of the process and you may find you direct your anger to those who are closest to you
    • You may feel resentment towards parents of neuro-typical children
    • Your anger may come out in different ways: snapping at people, overreacting to small things, screaming and yelling etc.

 

  • Denial
    • Denial is a way of coping to assist you to get through a particularly difficult period
    • You may struggle to hear facts about your child’s diagnosis
    • Be careful in this phase so that you do not lose focus on your child’s treatment process

 

  • Loneliness
    • You may feel isolated and lonely
    • You may feel that people are not supportive or that you cannot reach out to people for support because they simply will not understand

 

  • Acceptance
    • Ultimately, you will reach this stage of acceptance
    • This stage of accepting the diagnosis means that you are ready to advocate for your child
    • You may revisit some of the other stages at times. This is normal

Taking Care of Yourself:

In order to take the best care of your child, you need to take care of yourself first. You may find yourself so busy meeting your child’s needs that you forget this important step. It is important for you to consider your own sources of strength, coping skills or emotional attitudes.

You may feel overwhelmed and not know where to start, but there is no single way to cope. Everyone copes with the diagnosis and relieves their stress differently.

Some tips for this period:

  • Start by getting treatment or support. As soon as your child is in some kind of intervention and you are able to see some progress, you will start to feel better about the prognosis
  • Ask for help. It can sometimes be difficult to ask for help, but people around you may want to help or support you. Do not hesitate to take them up on their offers for support or assistance
  • Talk to someone. Letting someone know how you feel and having a person to listen to what you are going through can be a great source of strength
  • Consider joining a support group. These can be a great source of support, especially hearing that you are not alone and that there are others who really do understand what you are going through. Support groups can often also be a great source of information regarding services and resources available to you
  • Try to take a break. This may seem like an impossible task, but doing so, will help you feel renewed, even if it is for a few minutes (for example, taking a walk or visiting a friend)
  • Consider keeping a journal. This may be a useful tool for keeping track of your child’s (and your own) journey and also to keep track of the progress your child is making or where they are struggling etc.

 

Telling Friends and Family members:

“Autism doesn’t affect one child, it affects the entire family” (Autism Speaks, 2012). While some families are incredibly supportive, others struggle in their journey of acceptance related to a diagnosis of autism. This often makes the journey of the parents of the child incredibly difficult.

Breaking the news about the diagnosis can sometimes be stressful. It’s important to tell friends and family as these are the people who will most likely be your biggest support.

One way to consider starting the discussion would be to first highlight the behaviours. These are the things that people would have noticed as being different and that may have had people confused. You could then say that these behaviours have been given a name: autism.

The term, “autism” may help explain why your child responds to people and stimuli the way they do, and the fact that your child is not (as many may have thought) been misbehaving, but rather that he/she does not know or have the skills yet to cope. You can then highlight what your journey will entail e.g. what therapies your child may be starting, progress that they have made or what information, doctors or support services have already been given you.

Families are also able to contact us (AWC) should they want/need further support in this area or in understanding the diagnosis.

You may also let your family, or friends know how they could support you, i.e. what would be most helpful to you as a parent of a child with autism.

Don’t be afraid to tell people. It’s a way to educate others.

 

Tips for Parents:

  1. Advocate for the rights of your child
  2. Don’t hide your feelings or try to push them away. It’s important to talk
  3. If you are angry, direct this towards the disorder, not people (your child, loved ones)
  4. Appreciate the small successes your child has
  5. Get involved in the autism community (e.g. support groups, workshops, etc.)

 

Tips for Siblings:

  1. You are not alone. Every family has its challenges. These are different, but most families have to face difficult situations together
  2. Be proud of your brother or sister. Learn to talk about autism in public. If you are comfortable about the topic, others will be too
  3. It’s okay to be sad or angry, but try not to hold onto these feelings for long periods of time. They will just make you unhappier
  4. Spend time with your mom and dad alone. It’s okay to want time with just you and one or both of your parents. Doing things together with your brother or sister as well as without them, will strengthen your family bond. Find the right balance
  5. Find activities you can do with your brother or sister (even if it is ust doing a simple puzzle together or building a block tower). This connection will be rewarding and will create closeness

 

Tips for Grandparents and Extended Family:

  1. Offer your support, whether it is a cooked meal or an offer to watch the children while parents go out for some alone time. These small gestures mean a great deal to families
  2. Sometimes you may find that you are also having a hard time dealing with the diagnosis, so it is important to make sure that you also have support and are able to talk to someone about your own journey
  3. Do not judge and do NOT compare the child with autism to other typically-developing children
  4. Educate yourself about autism
  5. Try to balance your time with the children so that siblings feel special, but also ensure that you spend time with the child who has autism