After Diagnosis

Diagnosis:

Autism can reliably be diagnosed by 18 months of age; however Asperger Syndrome tends to be diagnosed later than this.

After diagnosis:

Hearing your child has Asperger Syndrome is one of those life changing events.

Everybody will react differently to a positive diagnosis of Asperger Syndrome for their child. Some may feel relieved that there is finally a name for why their child is different. Or some may me feel justified in the fact they have been telling people for awhile that they think there is something different about their child. Some will be glad that the diagnosis will open up access to services that will support their child. Others may feel shocked and blame themselves for their child being diagnosed.

Do not be surprised if the shock you first feel upon hearing that your child has Asperger Syndrome, changes to sadness and grief. You may also start thinking about what this means for the future of not only your child, but also the rest of your family. You may begin thinking about all the different life changes that will occur for your child throughout their lifetime and how much support they will need to function well in day to day life.

Don’t be surprised if you initially end up “counselling” other family members (like grandparents and aunties and uncles) and find yourself helping them get through the first period of grief. But you need to make sure you allow yourself to grieve and to express your hurt and disappointment. These are natural feelings and you are allowed to have them! It is ok to be mad and want to lash out at someone or something. These feelings will pass and you will find that soon enough you will be getting down to the business of doing what needs to be done to help your child and family cope as best as you can. However, having said that, you need to admit when things are getting too much. Ask for help. It is not a sign of weakness to say you have no idea what to do in a situation. These are the times your family will be there for YOU, these are the times they can stand up for you and say it will be ok. These are the times where you can contact support services to ask for advice or simply an ear to listen to how bad a day you are having.

The feelings of grief you may experience has been likened to the five stages of grief cycle developed by Elizabeth Kubler-Ross to explain the stages of grief a person goes through when told of a terminal illness: denial and isolation; anger; depression; bargaining; and finally acceptance. The difference with parents of a child with Asperger Syndrome is that they do not go through stages but a continual cycle, go through different stages at different times and never completely ever get out of this cycle. However, the positive side is that parents do eventually learn to spend more time in the acceptance stage.

Shock and disbelief:

Even though you probably suspected for a long time that something was different about your child, it is a whole different thing for someone to tell you this. After hearing the diagnosis, allow yourself time to just “feel” what it is you are feeling, don’t make any major decisions at this time as you are probably still in shock.

Denial:

You may then feel like there has been a mistake made, this might be the time when you consider second opinions. Take the time to learn about Asperger Syndrome and arm yourself with knowledge to help you accept the diagnosis.

Anger:

You may begin to say things like “Why me?” or “Why did I have to be the one who had a child with a disability?”. Don’t beat yourself up if you think or feel these things. It is ok to be angry, this is normal but a word of warning – be careful who you direct this anger at. Don’t go blazing into school demanding all sorts of unrealistic things and don’t yell at your spouse and blame them.

Powerlessness/confusion:

Here’s where you feel like you have no idea what is going on. You may never have heard of some of the things people are talking about but you can change that! Find out everything you can and use this knowledge to arm yourself. Ask questions if you are unsure.

Depression:

This is when you realise that Asperger Syndrome never goes away. It is always there and always needs something. You may feel like you just keep struggling and nothing ever gets better. Take some time for yourself and don’t let your favourite hobbies or pastimes slip by. This is the time you need your friends the most, do something that is just about you and not your child.

You may feel things like you have to give up on the future you had envisioned for your child, and it has been likened to mourning the death of the child you never had. You haven’t actually lost your child, but the one you dreamed about, the one you made plans for and hoped and dreamed about. You may grieve for the relationship you wished you would have, the loving, carefree relationship. You have to learn to deal with the fact that your child may not say “I love you” or give you a hug and kiss very often. This can be challenging for some parents.

You need to acknowledge your grief as well as the continual resurfacing of emotions. Recognizing where you are on the grief cycle will allow you to use that information to empower yourself to move on.

Guilt:

This generally involves you asking questions like “Did I do something wrong?” or “Am I being punished for something I did a long time ago?” Later on you may think things like “I’m not doing enough for him”. Take a step back and look at the things you DO do for your child and realise you can’t change things that happened in the past and that really they have nothing to do with what is happening now.

Embarrassment:

Eventually you are going to come across a situation where you are going to be embarrassed by your child in public. You will worry about how their reactions are going to be viewed by others and wonder if they are judging your parenting skills as a result. You will eventually be able to say “who cares?” and let it slide. Honestly, it does happen.

Fear and panic:

Transition times are the worst times for this. You may find yourself asking questions like “Oh no, what is he going to do when he has to start a new school?” or “What will happen to her if I die?” Use this fear to figure out what you need to do to reduce the anxiety around a certain situation, and do it.

Bargaining:

This is when you may find yourself bargaining with whatever higher power you believe in and making “deals” like “If you help me pay for this private therapy, then I will volunteer at the school more”. Eventually the level of bargaining you do will reduce as you accept your child for who he/she is.

Hope:

You will have times when you are extremely hopeful and encouraged by changes or improvements in your child. Be excited about each and every accomplishment and enjoy them. These are the memories and experiences that you will draw on when you are feeling low and in need of reassurance.

Isolation:

Be careful not to isolate yourself from others. You may do this for several reasons; maybe you are embarrassed of your child, or seeing other children without Asperger Syndrome is too hard or because you want to protect your child. Try not to do this. Find a local support group that will allow you to share your experiences with like minded parents. But also keep in contact with your family and friends; they can be a major source of support and encouragement for you!

Acceptance:

Acceptance will come….but AFTER working through some of the other stages. Then you will begin to feel like you have some control over what is happening for your child and family. Hopefully you will move on to be able to see the strengths associated with having Asperger Syndrome (such as attention to detail, ability to concentrate for long periods of time on topics of interest, systematic approach to certain things) and how, if they are harnessed usefully, they can be very useful and productive. As well as the fact that with early and appropriate intervention real change and growth can occur.

Acceptance also means that you understand that you may be at a different stage in the grief cycle on any given day, that this is ok, and that you know you can get through it. Because, guess what? You can!

We have provided a list of services you can contact when you need to. Make use of them, there is no point trying to do this on your own. You need to ask for, and accept, help.

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