MY CHILD'S BEEN DIAGNOSED AS HAVING AUTISM - WHAT DO I DO NOW?

Parents typically go through a wide range of emotions when their child has been given a diagnosis of Asperger's syndrome or autism. Grief and loss are common emotions as parents invariably picture wonderful things for their child's future. The diagnosis will entail readjusting these expectations and this can be a painful process. Along with this may well be fears for the future. As developmental disorders, it is hard to predict what levels of independence and life skills an autistic child will develop by adulthood.

Dealing with the diagnosis

Some parents may experience denial of the diagnosis. This can be a normal reaction to major shock and denying the diagnosis may be a protective mechanism until the shock has worn off. On the other hand, there can be relief at finding a reason for delays in a child's development, and finding practical strategies to help their child. The most common reactions reported by parents include devastation, helplessness, surprise or relief that inexplicable behavior is finally understood (National Autistic Society 2006c).

Everyone reacts to major life events in different ways, and parents should be understanding toward each other if their reactions differ widely. Sometimes grandparents can make the situation difficult for parents, by not accepting the diagnosis. They may feel that more discipline is needed, or even that it is bad parenting.

There are clear steps that can help parents deal with a diagnosis:
• Begin steps for assessment and early intervention

• Make sure the professional who made the diagnosis fully explains your options
• Learn about behavior strategies and strategies to support communication
• Join a parents support group.

Impact on the family system

The shock of an autism or Asperger's syndrome diagnosis can be likened to throwing a pebble into a pond. The ripples most affect the immediate family, then extended family, friends, school and the community. Siblings, grandparents and others who are close to the family will all have their different reactions. Provide everyone with information on the disorder and encourage discussion on the issue.

Getting informed about autism or Asperger's syndrome

Parents will understandably want to learn as much information as possible and look for appropriate therapies and interventions to help their child. There are many good books available and this site provides a comprehensive overview of the many issues surrounding Autism Spectrum Disorders. It can be very daunting at first but the overall picture will fall into place eventually.

It is completely understandable that parents would hope for a simple cause of Autism Spectrum Disorders, and a simple cure. However, these are life long disorders - genetic component has been established as a cause, and some claim that environmental causes might also be involved, leading to much debate about diets and alternative therapies. Be open to new approaches but also have a healthy skepticism in your research. Look for evidence-based treatments where possible. Remember that early intervention can make a big difference in minimizing delays in a child's development.

support groups

Join your local autism association and see if they have a parents support group. A support group can be a great source of support, encouragement, information and inspiration. If there isn't one in your area, you can speak to your autism association about starting one yourself. Even an informal morning tea every month can create a support group that takes minimal effort to run. If no groups exist in your area, explore the on line forums and blogs that many parents visit.

early intervention for your child following diagnosis

Autism and Asperger's syndrome lead to delays in your child's development. Early interventions seek to minimize these delays to achieve as normal a life as possible for your child. Early intervention is important to prevent your child dropping further behind in reaching developmental milestones. Talk with your autism association about options in your area.

Parents can feel they are letting their child down if they can't afford the most expensive therapies available, but remember the most important therapy usually takes place in your home. Learn as much as you can about the interventions you adopt, and apply these principles in the home environment. This consistency along with therapies outside the home will benefit your child greatly.

Mainstream therapies

To date, the most rigorously tested and effective interventions are the behavioral ones such as:

• Applied Behavior Analysis

• Lovaas program

• Positive Behavior Support.

Developmental interventions are proving effective as more research is conducted. Examples of these include:

• Developmental Social-Pragmatic model

• Responsive Teaching

• Floor Time

• Relationship Development Intervention.

Sensory Integration Therapy is a proven intervention for the problems with sensory problems with touch, smell, hearing, taste and sight experienced by children on the autism spectrum. Occupational therapists provide this therapy, which also assists with difficulties in movement, coordination and sensing where one's body is in a given space.

Alternative and biomedical therapies

Unfortunately, research moves slowly and there are other interventions that haven't been rigorously tested yet. Some parents may claim a 'miracle cure' from a special diet that does nothing for another autistic child. However, anecdotal evidence suggests that a fair number of parents see varying degrees of improvement in their child with the removal of artificial flavor and coloring, preservatives, casein (dairy-free), gluten (wheat-free) or salicylates (found in certain fruits) from diet. In addition, some parents find that certain herbs, vitamins or yeasts have helped. To date, most of these approaches lack the rigorous research that would qualify them as evidence-based treatments.

For more information, see Biomedical Intervention on the Early intervention page.

Maintain a health skepticism toward all INTERVENTIONS!

Some people claim miraculous benefits, in good faith or otherwise, for interventions that are not yet rigorously tested. But some of these therapies may help, even if it is only addressing a comorbid issue alongside autism or Asperger's syndrome. Remember that each child has a diverse range of issues from being on the autism spectrum and will respond to various interventions in various ways. There are also less reputable services providing miracle cures on the Internet that seek to exploit every parents desire to see their child develop as normally as possible.

Some children improve substantially even without therapy, so it is very difficult to know when therapy has definitely made the difference. In other cases, a therapy may work so well for one child it will appear as if it has 'cured' the autism, but may only have moderate to little effect for most other children. Rigorous testing gets around this by looking at large groups of children under a therapy, and have a 'control group' of children not under the therapy. Unfortunately this approach has not been applied to many new therapies so far.

When looking at interventions, try not to be swayed by unsubstantiated claims on websites or glossy brochures. You will also be looking for the following in this order:

• Rigorous controlled double blind trials to establish an intervention as evidence-based

• General agreement on effectiveness from autism associations, researchers, journals etc.

• Anecdotal evidence from wide range of parents who have used the therapy.

Remember the overwhelming majority of parents eventually conclude that the best thing for their child is focusing on love, patience, hard work and finding a suitable mix of therapies instead of the 'miracle cure'.

finances, interventions and autism

Parents want the bets for their children, and some therapies are very expensive. Check with your nearest autism association about government subsidies, financial aid, therapists who provide 'sliding scales' of fees for low-income families and so on. Joining a support group is great way to learn from other parents' experiences about cost-effective interventions. If you are unable to afford therapies, or have none in your region, see the Do-it-yourself early intervention fact sheet.

Consider making lifestyle changes to pay for interventions. Choosing a simpler lifestyle will not only free up money for your child's future but will probably be better for the environment as well. These personal sacrifices are difficult for many parents of newly diagnosed children to overcome. Early intervention therapies take sacrifice, but the hard work will be worth it in the long run.

The glass is half full

Actively choose to see the positive side of things. Concentrating on the negative aspects of autism or Asperger's will only discourage you and your child. Look out for and celebrate all signs of progress and reaching milestones. Concentrate on the things your child does well and let them know about it.

Encourage your therapists, teachers and family. A positive attitude is infectious and others will want to help your child and your family even more. Provide them, with the most up-to-date information possible. Attitude counts for so much - choose to never give up.

Ignore stigma and unhelpful comments

Challenging behaviors from your child in public places can be difficult to handle. A tantrum in a library can lead to all sorts of looks that take little interpretation - "What a hopeless parent", "He just doesn't get enough discipline", "What a horrible child, she must have lousy parents" and so forth. Unfortunately you may have to develop a tough skins and realize there are people who make superficial judgments of others. The problem is their lack of understanding - don't accept their unwarranted criticism and feel anger toward your child.

maintaining your lifestyle and pacing yourselves

Being a parent of a child with autism or Asperger's can be similar to running a marathon - you need to pace yourself for the long term. Don't burn yourself out trying to 'cure' your child in the first year. Most early intervention therapies take time before results are seen.

For your own good, and therefore that of your child, you will need to maintain your friendships, hobbies, interests and relationships. Where necessary, use respite care, babysitting and extended family to get time to yourselves and enjoy life. There is a natural tendency to focus everything on your child but you will need to achieve a balance in order to provide them with consistent love and support over the years.

Click here to read a fact sheet on self-care strategies for parents.

Click here to read a message for parents from an adult living with autism.

Click here for the full range of Asperger's and autism fact sheets at www.autism-help.org
This autism fact sheet is under copyright of www.autism-help.org