Leave No Autistic Mother Behind: Autism and Motherhood – Experiences, Challenges and Positive Strategies (COSP12 Side Event)

Submitted by bobb on Thu, 20/6/2019 - 07:46

A4 and AFDO represented in UN Side Event

13 Jun 2019 -  Autism is a partially genetic, lifelong neurodevelopmental difference, yet there is limited research examining parenting in autistic mothers.

This side-event will discuss, from both an academic and an experiential point of view – including through 2 panellists who would be speaking both as researchers and as autistic mothers – the experiences of autistic mothers in areas related to parenthood: pregnancy, childbirth and the postpartum period, self-perception of parenting strengths and weaknesses, communication with professionals in relation to one's child, and the social experience of motherhood, including disclosing one’s diagnosis of autism in parenting contexts.

Here's what needs to happen to get the NDIS back on track

Submitted by bobb on Tue, 4/6/2019 - 09:08

Helen Dickinson

More than 277,000 people have already benefited from the NDIS, but there’s room to improve.

In one of his first official public remarks since being re-elected, Prime Minister Scott Morrison pledged that addressing failures in the national disability insurance scheme (NDIS) would be a priority for the new government.

Stuart Robert has assumed the role of minister for the NDIS and will be charged with delivering on this important agenda.

So what does the new minister need to do to get the NDIS back on track?

Conference of States Parties (CoSP) to the CRPD, 11 – 13 June 2019

Submitted by convenor on Fri, 31/5/2019 - 12:30

AFDO is pleased to be participating again this year in the 12th Session of the Conference of States Parties (CoSP) to the Convention on the Rights of Persons with Disabilities (CRPD).  CoSP will be held from 11th to 13th June 2019 at the United Nations Headquarters in New York.

AFDO and A4 are co-sponsoring a side event, "Leave No Autistic Mother Behind: Autism and Motherhood – Experiences, Challenges and Positive Strategies",  on Thursday 13th June from 3pm – 4:15pm (New York time).

SA: Family struggling to find carers for autistic daughter despite NDIS funding

Submitted by bobb on Fri, 31/5/2019 - 09:20

Helen Campbell knows the risk her daughter Annie poses. Her needs have been deemed so complex, that the South Australian Government has funded two carers at once to look after her in recent years.

Despite current funding through Disability SA, Ms Campbell and her eldest daughter Lisa have struggled to find agencies or carers willing to take Annie on a long-term basis.

She is worried this will only be more complicated when her daughter transitions to the National Disability Insurance Scheme (NDIS) at the end of June.

Autistic people with intellectual disability often excluded in studies

Submitted by bobb on Wed, 22/5/2019 - 00:00

Ginny Russell  

About half of all people with autism also have intellectual disability. But a great deal of autism research is drawn almost exclusively from participants without intellectual disability, as my colleagues and I reported earlier this year1.

And yet, the researchers tend to generalize the findings across the whole spectrum.

This sort of selection bias has a lasting effect on our understanding of autism. It could also undermine the search for effective therapies for people with the condition.

Have your say on the future of autism research

Submitted by bobb on Mon, 20/5/2019 - 00:00

Today we call on autistic Australians, families, carers, and the broader autism community to have their say on the future of autism research priorities. Individuals and organisations involved in providing services and supports, as well as managing policy that affect autistic people and the autism community are also asked to contribute.

The outcome of this community consultation process will help guide the future focus of autism research activities and research funding in Australia.
 

Landmark summit on autism health care kicks off

Submitted by bobb on Sun, 19/5/2019 - 14:32

Hannah Furfaro

A panel of autism scientists and advocates is charged with a tall order: making recommendations for the care of autistic people worldwide. The panel is slated to meet for the first time today after the 2019 International Society for Autism Research annual meeting in Montreal.

Convened by the journal The Lancet, the group includes more than 20 of the world’s leading autism researchers, clinicians and advocates. Its goal is to review research and make concrete suggestions on health care and health policy.

Advocates blame NDIS failures as families give up severely disabled children to child protection

Submitted by bobb on Fri, 10/5/2019 - 06:54

Richard Willingham

Children with high-needs disabilities are living in child protection because their parents can no look longer after them, with advocates blaming a lack of support from the National Disability Insurance Scheme (NDIS) for forcing parents to give up their children.

Key points:

The Concept of Neurodiversity Is Dividing the Autism Community

Submitted by bobb on Thu, 2/5/2019 - 07:37

Simon Baron-Cohen

It remains controversial—but it doesn't have to be

At the annual meeting of the International Society for Autism Research (INSAR) in Montreal, Canada, this week, one topic likely to be widely debated is the concept of neurodiversity. It is dividing the autism community, but it doesn’t have to.

The term “neurodiversity” gained popular currency in recent years but was first used by Judy Singer, an Australian social scientist, herself autistic, and first appeared in print in the Atlantic in 1998.