AUTISM SPECTRUM DISORDER (ASD):
Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. The ability to develop friendships is impaired, as is their capacity to understand other people’s feelings. All people with Autism have impairments in social interaction social communication and imagination. This is referred to as the ‘triad of impairments’. “Autism is a severe disorder of communication, socialisation and flexibility in thinking and behaviour, which involves a different way of processing information and of seeing the world” – Jordan, 1997.
INTRODUCTION TO ASD
This booklet was designed as an introduction to ASD and the diagnostic process for parents and carers. Autism Spectrum Disorder(ASD) booklet, contains information and resources related to ASD. It is available for download here.
A diagnosis, of any description, can be made when there is sufficient functional impairment in the life of a child or young person – to the extent that he/she requires substantial support. In the absence of significant functional impairment, it can be argued that a diagnosis is not justified, as it serves no practical purpose.
At best, a diagnosis provides a common language for professionals, structures the allocation of resources and supports to assist the child and his/her family, guides parents/carers and teachers in their understanding and approach to the child, contributes towards educational and vocational planning, informs the selection of empirically-supported interventions, facilitates research, and organises a shared knowledge base.
Currently, there is not an empirically-supported bio-marker for A.S.D. – that is, there are currently no blood tests by which to diagnose A.S.D. Therefore, A.S.D. can be very difficult to diagnose. Presently, Clinical Psychologists, Psychiatrists, or Developmental Paediatricians – in the contest of a multi-disciplinary standardised assessment to include input from Speech and Language Therapists and, if indicated, Occupational Therapists – must consider an individual’s behaviour to make a diagnosis. A diagnosis of A.S.D. is made based on information provided by informants (i.e., the child or young person, parents/carers, and teachers), observation of the child or young person, consultation with relevant professionals, as well as the use of standardised assessments.
While the identification of A.S.D. has improved, diagnostic decisions can, at times, result in a false positive (i.e., where the child or young person is diagnosed with A.S.D., but he or she does not actually have A.S.D.) or a false-negative (i.e., where the child or young person is not diagnosed with A.S.D., but he or she does have A.S.D.). If, as the child or young person develops, it is suspected that the current diagnostic decision requires review, reassessment can be requested by, for example, General Practitioners with parental consent (i.e., if the child is under 18-years of age).
The following information was gathered from the C.D.C. in the U.S., a reliable source of information. More information can be found by visiting the web site (www.cdc.gov). Presently, prevalence rates in Ireland are not amassed in a systematic manner.
A.S.D. occurs in all racial, ethnic, and socioeconomic groups, but is five-times more commonly diagnosed in boys than girls. Current C.D.C. estimates at the time of this report were that approximately 1-in-68 children have been identified with an Autism Spectrum Disorder. It is presently unclear how much of this increase in diagnosis is due to better practice and greater awareness amongst clinician; however, a true increase in the number of people developing an A.S.D. cannot be ruled-out at present. It is widely held that the increase is due to a combination of these factors.
Parental concerns are generally valid and are predictive of developmental delays: Research indicates that parental concerns detect 70%-to-80% of children with developmental disabilities (e.g., Glascoe, 2000; Squires, Nickel, & Eisert, 1996).
By age two-years, a diagnosis can be reliably made by an experienced clinician (Lord et al.2006). However, many children are not diagnosed until they are much older.
The cause of A.S.D. is unknown. However, it is believed there are likely to be many causes for multiple types of A.S.D. There may be different factors – such as genetic, biologic, and environmental – that may make a child more susceptible to have an A.S.D.;
Most scientists agree that genes are one contributing factor (Huquet & Bourgeron, 2013).
Children who have a sibling with A.S.D. are more likely to also have an A.S.D. (e.g., Rosenberg et al., 2009)
A.S.D. tends to occur more often in people with certain genetic or chromosomal conditions, such as Fragile X Syndrome (DiGuiseppi et al, 2010), Tuberous Sclerosis (Cohen et al., 2005), and certain metabolic disorders and dysfunction (Zecavati & Spence, 2009)
In terms of possible environmental factors, higher rates of A.S.D. are associated with drugs taken during pregnancy, such as Valproic Acid (Christensen et al., 2013) and Thalidomide (Stromland, Nordin, Miller, Akerstrom, & Gillberg, 1994).
There is some evidence that the critical period for developing A.S.D. occurs before, during, and immediately after birth (Gardener, Spiegelman, & Buka, 2011)
Children born to older fathers and mothers are at greater risk of developing A.S.D. (Durkin et al., 2008).
There is currently no “cure” for A.S.D. However, research indicates that early intervention (i.e., to help a child talk, walk, and interact with others) can improve a child’s development (Handelman & Harris, 2000). Growing evidence suggests that a small-minority of individual progress to the point where they no longer meet the criteria for a diagnosis of Autism Spectrum Disorder (ASD). This does not mean that the child or young person does not have A.S.D., just that they no longer meet diagnostic criteria. There is the possibility that successful treatment can, in some instances, support high-functioning (in terms of cognitive ability) individuals on the Autism Spectrum to score within the Average Range on tests for language, adaptive functioning, etc – but these individuals may still have mild difficulties with social communication. Currently, the percentage of individuals on the Autism Spectrum that will progress to the point where they “lose their diagnosis” is unknown. Further research is needed to determine what genetic, physiological or developmental factors might predict who might achieve such outcomes. Further research is also needed to clearly document the potentially effects of removing the diagnosis, which coincides with a withdrawal of potentially important supports and entitlements.
Many people with a diagnosis of A.S.D. go on to live independent and fulfilling lives – i.e., to work productively, develop relationships, etc. With better interventions and supports available, those affected by autism are having better outcomes in all spheres of life (Handelman & Harris, 2000).
Certain alternative treatments (e.g., special diets, chelation, secretin, and deep pressure) are highly controversial and potentially dangerous. Current research indicates that as many as one-third of parents of children diagnosed with A.S.D. have tried alternative medicine treatments, and up to 10% of these parents may be using a potentially dangerous treatment on their child (Levy, 2003). Before starting any treatment, discuss the matter with the child’s G.P. or Paediatrician.
There are no medications at present that can cure or even treat the main difficulties associated with A.S.D.
CHECK OUT THIS NEW WEBSITE CREATED BY AN IRISH TEENAGER WITH ASD
Click here to take you to the website…… Let’s go
AsIam.ie aims to provide a one-stop-shop for the Autism community in Ireland. From providing the public and those with the condition a portal of information about Autism, to providing a platform for people affected by Autism to share their stories and views, to providing a strong voice for the concerns of the community – AsIAm.ie has it all!
AsIAm.ie sums up its aims under 4 key headings:
Educate – AsIam hope, through increasing and improving accessibility of information, to equip people with Autism and their families to understand the condition better. Additionally we hope to articulate and effectively communicate issues of concern to the AS community to those working with people with the condition and the general public. Helping to build a more informed and understanding society.
Empower – AsIam.ie passionately believe in providing those in the AS community with the tools to reach their potential. We believe that for too long those with Autism have been told what their needs are and what to do about them. We aim to be a user-led initiative, developing projects and campaigns based on the issues brought forward by our users, additionally we hope that through providing a platform we can help those affected by Autism to speak up about their concerns and to raise attention of issues of concern in their own lives.
Advocate – Acting as a hub for the Autism community in Ireland we hope to be able to draw on common areas of concern raised by our users and to develop public awareness and policy campaigns around these issues.
Community – AsIam.ie aim to provide a safe, pleasant space for the AS community to share experiences, concerns and ideas with others with similar experiences, breaking down the geographical and social isolation which has for so long plagued many people with Autism and their families.
AsIAm is registered with the Company Registration Office (Company Number: 553241) and has been granted charitable status by the Revenue Commissioners (CHY #21201) and the Charities Regulatory Authority (CRN #20144838)