Chapter 4 Results
4.4 Advice to Other Parents
As indicated in this research study, the road to an ASD diagnosis is, for many parents, a long, frustrating and stressful time. Participants shared their advice to parents who are
experiencing similar journeys.
Julia‟s advice was to act on first suspicions immediately, as this was beneficial to both the functioning of the child and family unit.
“…the minute they suspect something, it might be nothing, I would tell them to go and see someone immediately. Maybe not a medical doctor as such, but maybe more a psychologist or someone specifically working in that field…Don‟t leave it because the sooner you can start with the right therapies and that, it only benefits a your child, and then it actually makes your life easier too. It makes everyone‟s life easer if you are doing your bit and you‟ve got the right therapist and the right people working with your child…Some people find it difficult to accept.
You‟d be surprised how many people there are out there with children with Autism. You think you‟re the only one, and no body else out there. Then you start going to the shopping centres and you see certain things and you think „Ya well my child is not the only one, you know.‟ So the sooner the better.”
Sandra felt that the most important advice was not to become overwhelmed by thoughts of the future, and to take things one day at a time. She also recommended keeping track of work that therapists may be doing with ASD children.
“…take it step by step. Just don‟t think beyond the year, and do your homework. Research Autism, and if you are going to a therapist, follow through on what they‟re doing.”
Kirsten and her husband felt that acceptance was a vital part of dealing with the process.
They believed that too much information on the topic of ASD‟s would cause confusion and may become overwhelming. They considered it to be important to maintain a „normal‟ life as far as possible.
“You can‟t allow it to become all consuming of your life. You just have to accept that it is what it is, there is so much you can do, you try your best, you do whatever you can, we‟re not therapists, we don‟t have special insight that you don‟t have, and we‟re just ordinary people trying to make a reasonable life for ourselves. There‟s no use in ruining your whole family, your marriage, and everyone else‟s life for something that you can‟t actually do anything about. So we‟ve taken the route that we‟re doing the best we can, we try offer Tammy the best we can, we do as much with her as we possibly can, but she is what she is, and inside of that, we have to try and live as normal a life as possible. We‟ve got to get something out of this life as well. To allow it to become all consuming and destroy what‟s good in your life, those rocks that kind of, you put your own foundations down on; it‟s just not worth it.”
Joanne believed that it is of crucial importance to insist upon a correct diagnosis, and not to have concerns put aside by medical professionals. She felt strongly that if she and her husband had not fought for a diagnosis for their son, his future would have looked very different to the prospects it now holds.
“I would be like a bull dog, I would go in and keep asking and change doctors if you have to.
…just keep going, don‟t just be fobbed off, don‟t, and I was lucky having Chris because he‟s more of a scientific mind and he says „There‟s a reason for everything‟. „Don‟t come with me and say this global delay what, why is there a global delay?‟ There are reasons for global delays, he hasn‟t been knocked on his head or fallen out of his chair, he‟s not cerebral palsied, and he‟s not epileptic, he‟s not ADD, and I can go on. So then why is this healthy beautiful boy experiencing speech problems, and fixations and all these other things, why? So fight, fight, fight. I‟m very much for fighting.”
Carmen emphasized the importance of working with knowledgeable, optimistic medical professionals. She also felt that having a team of supportive medical professionals provided necessary support and assistance. Carmen believed that there are also great benefits to finding support with other individuals and families experiencing a similar diagnosis.
“Find a good language therapist who understands Autism. Find somebody who might say to you,
„I‟m not necessarily saying he is Autistic, but I‟ve worked with a lot of children who‟ve got his problem to a greater or lesser degree.‟ Find somebody who knows what they‟re doing, who doesn‟t buy into your denial, that is quite important, but someone who is compassionate. Seek as much, get a whole team together, I don‟t know that I handled it that well. If you‟re lucky enough to have a supportive family… Find other women who have children like yours, very important.
Find someone who‟s going through what you are going through. And when you are hysterical and they are two years down the process then that helps because they say, „Yes I know I was there, but this helps and this can be done‟. Find someone who gives you hope. Find good skilled therapists. Because without help what‟s the point. You always have a hope that somehow you‟ll make things better for your child.”
Michelle advised that a medical professional such as a Neuro-Paediatrican or Educational Psychologist who has a good knowledge of ASD‟s, was the correct place to seek assistance.
“Go to the right specialist. If you have any inclination or anyone has made any mention of the fact that the child is on the Autistic Spectrum Disorder or you are unsure or unhappy with the diagnosis made by someone else, go to a specialist, and probably a Neuro paediatrician or somebody who, you get Educational Psychologists who are incredibly clued up on it.”