Living with Autism

When we think about starting a family we have certain expectations and usually those do not include having a child with special needs.

After the diagnosis sinks in, not unlikely after you leave the specialist’s office, many parents wonder what there future will look like and some might even question if they have a future!

Although life with a child with autism certainly has its unique challenges, life does not end after such a diagnosis. However, in many cases it does mean saying goodbye to what you thought your future might look like and adjust to a different life. This takes time.

Some parents go through a process that is similar to a mourning process. A wide range of emotions is possible varying from shock, anger, and resentment, to fear, worry, and profound sadness. Some parents may feel guilt, while others may actually feel some relief at finally having a diagnosis. Emotions may vary but important is we allow those feelings and give ourselves time to readjust. Acceptance can take a while and depending on life’s challenges might even come and go.

Parents who have gone through such a process already, can support others by sharing their experiences and showing understanding.

What to do after an autism diagnosis?

Give yourself time

Adjusting your life to autism doesn’t happen overnight. It isn’t like picking up a different manual and simply continue with life. We should allow ourselves time to deal with the emotions . It is not uncommon for parents to experience a desperate sense of “having to do something”. But you can’t solve autism by doing everything at the same time, so take time to evaluate your situation and options.

Begin treatment for your child immediately

The longer we wait to start with treatment, the bigger the developmental delay becomes. It doesn’t require an official autism diagnosis to start with speech therapy when it has been established your child has a delay in this area. If your child is not doing well in school, tutoring, especially individually, will contribute to his/her education. There are standard therapies that are non-invasive and which will stimulate and contribute to your child’s development.

Still F.A.A. likes to emphasize that it is important for you, and the therapist working with your child, to know whether you child has autism or not. Autism requires a different approach and the person working with your child needs to have knowledge, or acquire knowledge, about the disorder and its general characteristics.

Don’t take too many decisions and make too many changes at once

This may seem contradictory to the previous point but although early intervention is very important it does not mean you should jump into just any treatment or therapy. As a parent you are the expert of your child but in making decisions about treatment and therapy it is important to involve and consult with professionals and look at the specific needs of your child. For autism there’s no “one size fits all”. Each child has his/her own specific needs and a treatment plan should be “tailor fit” . What my work for one child may not give the same results for another. Take time to analyze what your child needs and base treatment and therapy, together with a professional (your general physician/pediatrician, psychiatrist), on the individual situation.

Also people with autism in general have difficulty with change. So making too many changes all over a sudden might cause stress and trigger problematic behavior. Take time to explain and implement a change of routine (if needed with visual supportive material) instead of simply introducing it.

Learn about autism

Knowledge is essential to adapt to life with autism. You need to know what are general aspects of autism and why this manifests in certain behavior or how this affects the functioning of the individual in certain areas. Knowing what lies behind behavior and symptoms will help you understand, look for solutions and help to make necessary changes.

However the information that is available on autism may very well be overwhelming and it can be hard to make out what to start with and what applies to the individual.

Consult with your doctor, the F.A.A. and other parents if you have difficulty to find your way around in the maze of information. Ask questions about whatever you don’t understand

On this website we recommend other websites that give information about different aspects of autism. We encourage parents, professionals and visitors of our website to contact us if they have other informational sources they find helpful or would like to recommend.

If you post a comment with your recommendation we can put this on our website.

Maintain or implement (daily) routines

A Routine in the daily activities is crucial to make life with autism easier. Individuals with autism in general have difficulty to overview daily activities and very often lack the logic to know what will come next and/or organize their activities without help. With fixed daily routines (with small children you may even want to divide the day in smaller time frames) life can be made more predictable. When a child knows what to expect next or what’s expected of him/her it will give a sense of security and may relief symptoms like anxiety, anger, self mutilation, stemming, etc.

Daily routines work for every individual, with or without autism. It is just that for someone with autism it is more of a necessity. If you don’t have set routines for daily activities we recommend you implement those. Ask advice of professionals and/or parents with experience if needed. It will take adjusting, planning, implementing and you need to follow through but the benefit will be worth all the effort.

Join a support group

Don’t think you are the only one dealing with autism! There are many more parents and families living with autism in Aruba.

F.A.A. organizes parent support meetings on a regular basis. These meetings are free and are organized in an informal setting. The support meetings are intended for parents to exchange experiences, share emotions, give tips and hope, talk about problems and achievements, etc. Nobody knows what you’re going through but another parent!

Appreciate your child’s gifts

Your child with autism may be different than what you had pictured when planning to start a family, but your child is still your child with his/her own character, talents and capabilities. Don’t just look at the limitations but also look beyond those and make use of their strengths and capabilities. Many times we seek help for the problems we encounter with the children and tend to stay stuck in the negative. It is important we consciously look at the positive qualities of our children and appreciate those.

Keeping a diary about your child’s development may help you notice progress and development. Change may be slow and perhaps never as quick as we aspire but when we see on paper where we were a month before, we may notice we did make progress!

Things other people, with regular developing children, may take for granted, are great victory for parents of children with autism! Keeping track of progress will encourage you to continue with what you’re doing and see what’s working.

What might help to put some things into perspective is looking at some positive traits of autism, like people with autism hardly ever lie! You can look up more positive aspects of autism on about.com  (also www.autism.about.com). It will no doubt make you smile!

Get help

A child with autism needs special therapy and guidance and sometimes parents and caretakers are forgotten whilst they are the ones upholding the family. It is important the individual with autism to get help but also for parents and caretakers. Some of the above mentioned coping strategies can help, like joining a support group, but you may want to ask your general physician for a referral for professional help. Don’t see this as a sign of weakness but a way to stay strong.