Parental voices and controversies in autism

Recognising autism: a latent transition analysis of parental reports of child autistic spectrum disorder ‘red flag’ traits before and after age 3

“…The data from this survey are from 2004 and the sample's mean age was 10.51 (SD 3.39), indicating that most children from the sample were below the age of 3 in the mid to late 1990s. Research into ASD as a developmental disorder increased during the 1970s-1980s, challenging the notion of autism resulting from 'refrigerator mothers' [71]. The 1990s saw a wider awareness of variation in ASD and the concept of a spectrum of behaviours/diagnoses but the true tipping point of media awareness (and perhaps over-awareness) would not come until the early 2000's [72].…”

Les nouvelles représentations parentales de l’autisme

“…Elle considère que l'expérience d'élever un enfant autiste est enrichissante et lui a « permis de franchir la porte étroite pour aller à la rencontre de ce quelque chose en moi de plus grand, de plus noble, qui s'étonne de tout et s'émerveille d'un rien » (p. 35). Une vision moins négative avec une meilleure acceptation du mode de fonctionnement autistique commence à changer le regard de certains parents (Langan, 2011).…”

The changing face of parent advocacy: a long view

“…She typifies the challenge, expressing the work of 'the Society' as 'To try and get the children … recognised as people' (Nickson 2005, 78). Langan (2011) describes how parents of people with autism in the UK contributed to a move to respect and celebrate difference, rather than seek a cure, although this appears to differ from parents involved in autism movements in Canada (Orsini and Smith 2010) and Sweden (Bertilsdotter Rosqvist, Brownlow, and O'Dell 2015). Contemporary bloggers share this emphasis on portraying their relatives as fellow humans.…”

“…Closure of day services revealed differences between families, some of whom welcomed the opportunity offered for inclusion in mainstream services, but was resisted by many others who argued that their closure deprived their relatives of daily occupation, and of valuable time free of caring responsibilities (Mencap 2012;SASH 2015). Mary Langan, like Sara Ryan an academic with an interest in disability issues, and mother of a son with autism (Langan 2011), led a campaign against closure of local authority funded services in Haringey, London (Save Autism Services in Haringey (SASH). In a speech to the All Party Parliamentary Group on Autism she argued, It is impossible to reconcile the interests of people with autism and the current scale of cuts in adult social care.…”