Patient discussions

Discussions prior to an established diagnosis

  • Be mindful of, and try to mitigate against, any potential barriers to diagnosis. Anecdotally, people with ASD and their parents report frequent challenges and delays in the diagnostic process, typically describing it as a "battle". This can be a particular problem for girls and women, who may present differently to males, and who are often adept at masking the symptoms of autism.[89] There may also be the misconception, even amongst clinicians, that ASD is a male disorder. Evidence suggests that females are less likely than males to receive a diagnosis, despite comparable levels of symptom severity.[90][91] Evidence also suggests that black children with ASD are more likely than white children to receive a delayed diagnosis, or be misdiagnosed (e.g., with a conduct or adjustment disorder).[92]

Discussing diagnosis with parents and children

  • Consider the emotional and support needs of the person newly diagnosed with ASD (and their families) and be prepared to advocate for them if required.[328] There may be a perception among families that once a diagnosis is obtained, the support needs of the person with ASD will rapidly be met. However, anecdotally, people with ASD and their families report that this is not always the case, and that advocacy from families, as well as healthcare professionals, may be required to ensure that appropriate support is received.[328]

  • In practice, parents usually prefer to explain to their child about their difficulties and possibly their diagnosis at a time of their choosing. This is therefore done in a very individual way by parents, who may want to seek advice from other parents or from parent groups or charities that may support parents' decision-making about how much information to give, and when to give it. From a clinician's perspective, information about the child's difficulties is provided honestly and sensitively and explained at a level appropriate to the cognitive abilities of the child. Some parents prefer to explain differences to their child qualitatively, rather than naming the condition ASD; there is no right or wrong approach, but health, education, and social care professionals and carers should be made aware of the child's diagnosis, and their required interventions and approaches. Most autistic adults have their diagnosis explained to them by professionals; where intellectual disability is also present, parents or carers may prefer to explain the diagnosis themselves.

  • Parents should be advised about the increased likelihood of having another child with an ASD.[329] Parents are advised about the risk of epilepsy (approximately 20%-30%).[5][8][9] Children considered likely to have seizures are issued standard advice about situations that could lead to harm if a seizure were to occur (e.g., bathing, swimming, climbing, cycling, and other environments in which a loss of consciousness could lead to harm).

Education

  • In the US, children with disabilities are guaranteed a free and appropriate education (FAPE) in the least restrictive environment, under the Individuals with Disabilities Education Act (IDEA). US Department of Education: IDEA Opens in new window

  • Children older than 3 years who have disabilities receive educational services through their local school systems. Each child has an Individual Education Program (IEP), agreed on by the parents and the school. State funding may vary for preschool programs, such as applied behavioral analysis (ABA); programs are frequently expensive.

  • Local and regional policies relating to education and support should be consulted in other countries.

Online resources

Once a diagnosis is strongly suspected or confirmed, parents may appreciate specific patient resources, available online. These include information produced by the following agencies:

Vaccines

The CDC has concluded that the weight of evidence does not support a causative role in ASD for either thimerosal-containing vaccines or the measles-mumps-rubella (MMR) vaccine. CDC: studies on vaccines and autism spectrum disorders Opens in new window One systematic review to assess the evidence of effectiveness and unintended effects associated with MMR vaccine was unable to find any link between exposure to the vaccine and the development of ASD.[330] However, concern on the part of parents has led to decreased vaccination rates in some areas and to measles outbreaks.

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