Discussion and summary of the impacts of diagnosis on the individual with ASD and their families

For the purpose of this discussion it is important to distinguish between a) the impact of diagnosis on the individual with autism and their family and b) the impact of autism on the individual and the family. The autistic behaviours and their impact will have been the motivation for seeking a diagnosis, not the result. Therefore many factors such as high stress levels, marital tension, depression, effects on employment, education, leisure time, social life, time spent with partners, other children and extended family (Keenan, Dillenburger, Doherty, Bryne, & Gallagher, 2007) (Freedman, n.d.) will already have been in existence. This discussion looks at how the impact of a diagnosis of ASD alters or adds to these factors. As with so many areas of autism the effects of this impact sit on a spectrum with different families in different places and with any one family shifting on the spectrum as the passage of time brings new successes and challenges. Whilst creating the mind map of the impact and effects of an ASD diagnosis (activity 5) I became increasingly aware of how the impacts on the individual are very different from those on the other family members. In response to this I have considered the impact of diagnosis on the individual separately from the impact on the rest on the family.

Impact of diagnosis on the individual with ASD After reading personal recounts from both individuals being diagnosed and their families it would seem the impacts for the person with ASD are mainly positive but it is important not overlook the negative impacts as well. Positive impacts of an ASD diagnosis: Helps the individual, their family, their teachers and their friends to understand why they show certain behaviours and increasing understanding and tolerance. My approach to dealing with a child who spent a great deal of the time under his desk at school changed enormously when he received a diagnosis of Aspergers Syndrome. This had a direct impact on the child as we could put positive strategies in place. This was my first encounter with a child on the autistic spectrum. Thankfully the understanding and tolerance I gained from his diagnosis has transferred to other children either with or without a diagnosis. Allows appropriate autism specific services to be accessed as well as other support including educational and financial Helps in finding effective therapies and interventions Increases the chance of appropriate reactions and responses from others

Brings relief especially if the individual is older For a long time describing my life as a train wreck would not have been far from the truth. [But] this was all before I was diagnosed with Asperger syndrome. A year later, I've resumed my full-time education, I have new friends and interests, and work hard towards many goals and ambitions. It's not easy but I'm on track now. (National Autistic Society)

Could prevent bullying An increased awareness should result in a decrease in prejudice

Negative impacts of an ASD diagnosis: The labels of high and low functioning can be seen as discriminatory. The diagnosis of ASD can be frightening to others who have limited knowledge of autism. A diagnosis could lead to bullying. Children or adults may not want others to know they have ASD.

Impact of diagnosis on the family of the individual with ASD Again after looking at the literature and reading and listening to personal stories I recognised different groupings regarding the impacts of diagnosis: emotional and practical, negative and positive. Inevitably these effects are inter-related but for the purpose of this discussion they will be considered with in discrete categories. Emotional impacts of an ASD diagnosis: The Autism Speaks website refers to a progression through stages of emotions that families may experience when receiving a diagnosis: Shock: Even though a family maybe expecting a diagnosis, it can still be a huge shock when it is disclosed. For families or family members who are not familiar with the characteristics of autism this shock can be even deeper, to the point of being overwhelming.

I was shell shocked for a very long time after the diagnosis. It felt like a daze \ fog in which I didnt quite know what to either Do or even think and feel. (personal communication)

Sadness: Parents, siblings and grandparents may experience sadness or a sense of loss for all the normal experiences they had hoped to share with their child, sibling or grandchild and the aspirations they had for the childs future. I lost everything, I was terribly sad and at night I talk about it to my husband. I couldnt tell him because I never stop crying, crying. I couldnt tell him. (Raising Children) Anger: Parents may experience anger at this having happened to their family, or resentment towards other families with normal children. Parents may also experience anger at other families who, through lack of understanding, choose not to associate with them anymore. Additionally anger may come from despite having a diagnosis still having to battle for services, support and funding. Denial: A refusal to accept or the need to question the diagnosis is not uncommon. Initially, it was denial. I just thought, no this cant be right. And also, I didnt really have a great understanding of what autism was, so that also makes it difficult to comprehend what youre being told. (Raising Children) Loneliness: Families can easily feel they are all alone, especially in the period between diagnosis and support services making contact. This aloneness can be magnified if one member of the family feels they are unsupported by the others and being left to deal with the child by themselves. Devastated. Like my world was turned completely upside down. I was very fearful for the future. I felt very alone. (personal communication)

Acceptance: After time this will come to most families but for some it is an immediate reaction maybe related to a long period of fighting for a diagnosis or a comprehensive understanding of autism. It was almost a relief when the paediatrician started explaining all the different traits of autism just to sort of have an insight as to why Bailey was Bailey. (Raising Children)

The literature often identifies a difference between the emotions experienced by mothers and those by fathers. If the child is still young when receiving the diagnosis the father may have had far less to do with them than the mother due to being out at work during the day. Generally mothers seem to research into what might be wrong with their child and even suspect autism prior to asking for a diagnosis. My husband, Steven, took the diagnosis a lot harder than I did, because I read a lot into it before we actually took Jonathon in. Whereas, Steven, I wasnt sure if he didnt want to face what it was about, he was very, very in denial. It was his first born son, he really found it difficult. (Raising Children) I would add the emotion of guilt onto this list as with the growing evidence to support a genetic element in the causation of ASD, parents and grandparents may understandably question what role they have played in the childs disorder.

Other impacts of an ASD diagnosis: As well as the emotional impact there are other many effects stemming from the diagnosis of ASD. Again as with the individual receiving the diagnosis these effects sit on a spectrum from negative to positive. Negative impacts of an ASD diagnosis: Parents may find themselves in long, exhausting struggles to get the services their ASD child is entitled to from schools, social services and financial services. Other families may be fearful of the ASD diagnosis and no longer associate with the child with ASD.

Positive impacts of an ASD diagnosis: Some parents chose a change in career or education, something we have seen in our Specialist Teaching ASD group. One mother that I worked with is now a regional coordinator for an autism related support group and another has recently applied for a position with the local Autism NZ branch. Parents and grandparents are better able to research and educate themselves about the childs behaviours once they have a name for it. Family members develop an increased tolerance and acceptance of the child once they understand what is underpinning the difficult or quirky behaviours. On a personal level recognising that my partner has a number of Aspergers traits has helped me to understand and accept his long drawn out monologues, his tendency to take everything literally, his discomfort in social situations or a crowded shop and his

need to be scaffolded prior to family occasions. Behaviours that were pushing us apart are now the things that make us closer. The access to services and support that accompany a diagnosis can have a significant impact on a family. The provision of funding for respite care, services available to support the child with specific behaviours and the understanding and support of teachers may all have been far more difficult to attain without a diagnosis. For many parents that I have worked with a significant result of the diagnosis is their becoming part of a community or practice with parents of other children with ASD. One family explained to me how much they enjoyed the group picnics as this was the only time they felt relaxed in public as they knew other parents would not be judging them. These communities of practice are a vital emotional, social and educational support for the families and the diagnosis has been the key to their membership.

In the forum discussion on the impact of ASD diagnosis many of us have been shocked by the number of negative effects, however, when looking specifically at the impacts created by receiving a diagnosis I would argue that the overall effect is a positive one. This is not to undermine the challenges faced daily by these families and individuals but rather to recognise the benefits of having a diagnosis and the support and understanding it can bring with it. References Autism and your family. (n.d.). Retrieved from Autism Speaks: http://www.autismspeaks.org//what-autism/autism-your-family Freedman, B. (n.d.). The impact of autism on the family: Challenges and startegies for coping. Retrieved from http://ebookbrowse.com/freedman-the-impact-of-autismon-the-family-handouts-pdf-d361110233 How open should we be about autism? (n.d.). Retrieved from Family and Autism: http://familyandautism.com/2012/03/03/how-open-should-we-be-about-autism/ Keenan, M., Dillenburger, K., Doherty, A., Bryne, T., & Gallagher, S. (2007). Meeting the needs of families living with children diagnosed with autism spectrum disorder. Retrieved from http://www.imagesforbehaviouranalysts.com/uploads/1/0/2/5/10258235/ria_autis m_report.pdf Reaction to the diagnosis. (n.d.). Retrieved from Raising Chidren Network: http://raisingchildren.net.au/articles/asd_diagnosis_reaction_video.html

What are the benefits of diagnosis? (n.d.). Retrieved from The National Autistic Society: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-informationfor-adults/how-do-i-get-a-diagnosis/what-are-the-benefits-of-diagnosis.aspx