Information
Many parents had little or no understanding of the autism spectrum before they began to seek a diagnosis for their children. Some parents mentioned seeing...
Messages to other parents of children on the autistic spectrum
Many parents we interviewed found it valuable and reassuring to hear the personal experiences of other parents (see ‘Support groups‘). We asked parents if they had any advice for other parents and they offered a range of comments.
Sandy thinks it is important to focus on the positive things rather than look for things to blame.
The strongest message from parents was to keep fighting, not to worry about being a ‘pushy parent’ and to keep on at health professionals if parents were concerned about their child’s development. Some parents stressed the importance of getting an early diagnosis. One mother said, “Insist. Carry on insisting. Go every single day if you have to until they listen to you”, while another commented “It is no good burying your head in the sand because it is not going to go away. It is really not going to go away.”
Jacqui says you have to fight for whatever your child needs; nothing is given to you very easily.
Some parents emphasised that it was important to remember that “you know your child better than most other people.” Parents recommended keeping lines of communication open with education and health professionals because often walls can go up between parents and professionals. As one parent said: “I would say go with what you feel is right for your child because as I say, there are a lot of experts and there are all these interventions but at the end of the day, you have to feel comfortable with what you are doing.”
Another parent recommended, “An important part of the early days following diagnosis is to sort out the ones who can help you. I think a lot of people want to give you cups of tea and sympathy but despite credentials, may not know how to help your child. It is important to find professionals who have a track record of helping children like yours.”
Vikki thinks it’s important to be prepared to ask silly questions.
Some parents stressed how “there is light at the end of the tunnel” and things did get easier. As one parent said, “the autism spectrum is not stagnant and the children do not stay the same” (see ‘Positive change over time‘).
Katrina says’there is hope and we are very blessed because I think they are very special children.
Joy says you may be surprised at what your child can achieve.
Tracy says its not the end of the world it’s a life changing challenge.
Nicki received good advice from another parent soon after her son’s diagnosis.
Some parents stressed the importance of finding out as much information as possible and encouraged parents to keep reading about autism (see ‘Information‘). As one parent suggested, “Information is key. Research everything. Start looking, start looking into everything. Everything, absolutely everything and keep your mind as open as possible.”
Another parent said, “What is important about parenting people on the spectrum is picking your priorities and dealing with that one, and you can’t just address the whole lot all in one go because if they were doing something that is really inappropriate, like picking their bum in public or something like that, then you know that is what you deal with, you don’t go dealing with tact or whatever else, you focus on that one.”
One parent said it was important to keep calm and not fly off the handle if possible. Others strongly recommended joining a support group and talking to other parents who were going through or had been through similar experiences (see ‘Support groups‘).
