There are many questions which parents seek answers for. It can be frustrating, as many cannot be answered at this time. Some of the most frequently asked questions have been explored below, with thanks to Dawn Cunningham.
What causes ASD – Autism and Asperger Syndrome?
As understanding of the exact nature of ASD is still developing and research into possible causes is being pursued along different avenues, there is no clear answer at this time. However, there is considerable evidence to suggest that genetic factors play an important role in ASD with more than one gene being involved. It is thought that individuals may have a genetic predisposition to developing autism. There may be several different agents which can affect the same area of brain functioning and may be triggers which lead to ASD. Each may be different for every child. It may be environmental, biological, viral or a metabolic imbalance in the brain which could trigger ASD in the very young child. The idea described by Uta Frith of a ‘causal chain’ might help to make it clearer. “…we should think not just about the ‘cause’ of autism, but about a long causal chain… there is hazard, followed by havoc, followed by harm… This fact does not mean anything can cause autism. There is a single critical cause somewhere in the chain, but the agents that affect this critical link are numerous and varied.” [Frith (1989) p80-81] The search for the cause of ASD is ongoing and new developments and research results are always reported in the NAS website.
How many people have Autistic Spectrum Disorders?
No one knows the exact number of people with ASD, however using studies carried out in England and Sweden it is estimated that the number of people in Britain with ASD is around 518.500. This figure is calculated using the accepted prevalence rate of 91 people per 10,000. Within this number 71 will have Asperger Syndrome or be at the high functioning end of the Autistic Spectrum. [Wing (1996) in the British Medical Journal] In Scotland the estimated number of young people under the age of 19 years with ASD is thought to be 7714 as reported in the PHIS (Public Health Institute of Scotland) report ‘Autistic Spectrum Disorders – A Needs Assessment.’[PHIS (2000) p19].
Who has ASD?
There are more boys than girls in all groups. In the case of autism the ratio of boys to girls diagnosed is around 4 boys to every 1 girl. In Asperger Syndrome the ratio referred for diagnosis is about ten boys to every girl, however from studies looking at the distribution of ASD in the population it is predicted that the ratio of boys to girls would be expected to be the same as in autism of 4:1. [Ehlers & Gillberg (1993) cited by Attwood (1998)].
Am I to blame?
When Autism was first described, it was thought wrongly that the child with Autism was the result of poor parenting, that the child’s parents were cold and unfeeling sometimes referred to ‘refrigerator parents’. [Aarons & Gittens (1999)] This is definitely not the case. Parents often describe feelings of guilt as they look back at their child’s development. They look for something they did or didn’t do. Mums often feel they may be to blame particularly if they had difficulties in their pregnancy or delivery or if they had post-natal depression. It cannot be stressed strongly enough, that no one is to blame, nothing you did or did not do as parents has caused your child’s autism. ASD is a range of developmental disorders caused by the failure of certain structures and systems in the brain to function effectively. How these structures and systems fail to develop is one of the subjects of research into the cause(s) of Autism and Asperger Syndrome.
Is there a cure?
There is no known cure for Autism (ASD) however it is widely recognised that intervention approaches can have positive benefits and may significantly improve your child’s potential. Some intervention programmes claim to ‘cure’ autism. As there has been no clinical validation, the general consensus is that although these individuals have made significant progress they still remain on the Autistic Spectrum.
Are there medical issues relating to ASD?
There is no evidence to show that life expectancy is less amongst healthy people with ASD. However it is recognised that there is a high incidence of epilepsy in young people with ASD, approximately 1:4. Epilepsy does not develop in these young people until they reach puberty. The exact reason for onset of epilepsy at puberty is not yet known but may be linked to hormonal changes. [Edelson (accessed 2003)]
What other difficulties might my child have?
Autism can co-exist alongside other genetic conditions such as Downs Syndrome [Kent, Evans, Paul & Sharp (1999)], Tuberous Sclerosis, Fragile X and Rett’s Syndrome. [Aarons & Gittens (1999)] You may already be aware if your child has another genetic condition. Other difficulties, which have been observed in some children with ASD, are ADHD (Attention Deficit Hyperactivity Disorder), Dyspraxia and Dyslexia [Attwood 1998]. Many children with ASD may also have some degree of learning difficulty. As children with ASD have a unique learning style it is useful to know the intellectual ability of your child so that their programme of work can take account of any additional learning needs they might have. Is it the unique learning style of people with ASD or learning difficulties (additional learning needs) which have the greatest implication on your child’s access to learning?
Will my child be able to live an independent life?
This is a very difficult question to attempt to answer as no one can predict the outcome for your child particularly if they are very young. However, as knowledge of ASD improves and services develop, the young child with ASD has more opportunity now of developing and being supported in realising his / her potential.
Many people diagnosed with High Functioning Autism and those diagnosed with Asperger Syndrome do go on to live independently, marry and hold down employment. However a significant number of people with ASD will need additional support throughout their lives including those young people with additional learning difficulties.
Where can I go for help?
The Diagnostic Team who assessed your child is always willing to discuss any issues with you. They can provide information and pass you on to other services if required.
Professionals involved with your family can either offer information or pass you onto other services if required. Speak to your Health Visitor, G.P., Specialist Support Teacher, Community Paediatrician or Speech and Language Therapist.
Psychological Services can provide information on assessment, school provision and the Record of Need process. (The Scottish Executive has completed a consultation process with all agencies and parents with a view to replacing the formal Record of Need. The consultation document is called ‘The Way Forward’.
Social Work Resources can provide information on services and Benefits including Disability Living Allowance, (DLA is a benefit available to children and adults under 65 years of age who have a disability. There are two components, one for personal care needs [toileting, dressing, feeding, etc] and one for mobility needs.) They also provide information and advice about Community Care Assessment, Shared Care and Respite Care.
What about nursery and school? Can my child go to their local nursery?
Yes is the short answer, he / she can be educated with his / her peers. If your child has significant difficulties then it would be advisable for you to discuss this with your child’s Educational Psychologist before you register your child for a nursery place.
Can my child attend their local Primary/Secondary School?
Yes is the short answer. However if there are any issues regarding additional support needs for your child then your Educational Psychologist should be consulted. This is usually done routinely through Pre-Scat meetings for pre-school children or review meetings throughout Primary and Secondary Education.
How do I apply for a place at a specialist provision ?
The Educational Psychologist makes an application for specialist provision on behalf of parents to the Education Specialist Support Services Manager by the end of January of the school admission year. The process usually follows a Pre-Scat meeting for the pre-school child or a Review meeting for an older child. An admissions panel reviews all applications, usually in March.
Places are allocated following admission criteria for each establishment and parents are notified of the decision.
Will my child learn to talk?
There is no simple answer to this question. There is general consensus amongst professionals that if the development of spoken language (speech) is not evident by five years of age then it becomes increasingly less likely, as your child gets older, that he / she will use speech as a means of communicating. Many children do develop good speech but for those that don’t there are other strategies including the use of picture symbol systems: Picture Communication Symbols (PCS) and Picture Exchange Communication System (PECS) or signing (Makaton) which your Speech and Language Therapist may use to support your child’s communication.
What can I do to help my child?
It is recognised that the development of communication and language skills are an essential first step. Some children with ASD can appear to have exceptional language skills but when investigated it is found that they have poor communication skills, that is, they are unable to use the language they have to communicate effectively. A useful first step would be to contact your Speech and Language Therapist to discuss your child’s specific strengths and needs. The Hanen ‘More than Words’ course may be appropriate for you and your child. This will provide you with a good basic understanding of the development of communication skills and strategies to support your child. Take small steps.
Who should I tell?
Information about your child’s diagnosis is confidential. It is important that people who your child will be in regular contact with are told, family members, grandparents, close friends and babysitters. What you tell them should include simple information on the disorder and how you as parents want others to support you and your child. It is desirable that teachers and education authorities are also made aware as this can have implications for resources and strategies which may be required to support your child in their learning.
For young people with AS when to tell them about their AS and who to tell can be problematic. For some young people with AS information that gives them a label and thus makes them different from their peers can be unacceptable to them. For others it is almost a lifeline, an explanation as to why they are different. There are no rules about when you tell the young person with AS about their diagnosis. The best advice which can be offered is for parents to consider when they feel their child is emotionally mature enough to cope with the information about their diagnosis or when they start to ask questions as to why they are different, why they have difficulties in situations that other children find easy.
Telling your other children about their sibling with ASD can be difficult. They may already have picked up vibes that not all is well, they may also be anxious. Advice given by other mothers suggests that parents need to firstly come to terms with their own emotions before they can talk effectively to their other children. Once they have an understanding and knowledge of ASD then they will be in a better position to answer questions as they arise. There are a number of useful books written by parents for siblings to help them understand their brother or sister with ASD better. These can be found in the NAS publications Catalogue within the pack.
Which intervention programme should I try?
It is recognised that intervention can have positive benefits for many individuals with ASD. There are an ever-increasing number of Intervention Programmes, many developed in the USA, specifically focusing on ASD. (Information is given about some common intervention programmes in booklet 4 and contact information is available in the Directory of Contacts and Resources, booklet 5.) Some intervention programmes show benefits for some children, particularly those which include a structured behavioural and communication approach. However, independent research is still needed to identify if any programme is more effective that another. There is no one single intervention package that will suit the unique needs of each individual child with ASD, “often an approach which combines elements from a number of different approaches, and which is flexible enough to take account of individual differences, is likely to be the most effective intervention”. [Cumine, Leach & Stevenson (2000) p57.]
How do I know which is the best approach for my child?
The best advice that can be given is to talk to other parents who have tried some of the programmes and ask to see their programme in action. You know your child and your own family situation best; you know what is manageable within the context of your family. A high intensity approach may not be the most suitable for your family circumstances. Many parents do not choose to follow any specific programme but take the principles from some of the programmes and adapt these strategies for use in their own home. Also speak to your Speech and Language Therapist and any support staff who may be working with your child in home, nursery or school.