Friday, February 4, 2011

Irish family celebrates that they are all on autism spectrum

From The Irish Times:

All five members of the Wise family (pictured) are on the ‘autism spectrum’. They have spent years struggling to be diagnosed, to get assistance from the State and to stay together.

They're a complete autistic family. Mum, Dad and their three children are all on the autistic spectrum.

Damon Wise was diagnosed with mild autism, Asperger’s Syndrome, when he was 21. Karen Wise, who was only diagnosed five years ago, has a mild autism spectrum disorder (ASD) known as a Non-Verbal Learning Disability.

The pair met through Damon’s Star Trek network. Damon has founded more than 30 clubs and has 5,000 people on his mailing list. Karen was a fan but her social difficulties meant it was hard for her to get the words out the first couple of times she rang Damon.

Once they did meet, things progressed quickly. The couple got married in 1994 and started a family straight away. The couple’s first child died from cot death. They went on to have three more children: Michael (14), Eve (10) and Daniel (7). All of the children have some degree of autism. They also have, between them, multiple health problems: asthma, food intolerances, skin conditions, and chronic insomnia, to name but a few. At one stage, one of the children was only sleeping four hours a night.

Struggling to keep it together, the couple agreed to extend their respite foster care for Eve and Daniel to full-time foster care in summer 2009. They understood this was a temporary measure, to be reviewed at Hallowe’en 2009.

“They wanted to help us, we thought,” says Karen. “We needed sleep.”

“We needed help,” explains Damon.

They asked the Health Service Executive (HSE) childcare services to review the case in October 2009, but this didn’t happen. A meeting was called in January 2010, at which Damon and Karen understood that there was a possibility they might lose the children to full-time care.

The couple got themselves an independent advocate, Greg Duff of the Clare Advocacy Service, and contacted all the appropriate advocacy agencies they could think of, from Barnardos, the ISPCC, Irish Autism Action and the Office of the Ombudsman for Children. They also contacted the Legal Aid Board to instruct the HSE that they were withdrawing their consent for the children to be in care.

They made a formal complaint against the HSE on several grounds, most of which were not upheld. Following the complaints the HSE denies it had formed a plan to put the children into full-time care. However, it acknowledges “deficiencies in communication” regarding the children. It also acknowledges that the children’s school had recommended full-time foster care for the children and this was not made known to the parents “in a timely and transparent manner”.

The children returned to their family last May. A letter from their social worker to the Child Benefit section – which the couple obtained after the children had returned home – says the HSE must decide “whether to seek legal advice on the matter” of the children’s care and adds that the children “may return to care in the future”. But in July 2010, HSE childcare services confirmed it would not be proceeding with any court orders in relation to the children.

The Wises say they want services that help them rear their children themselves. They feel very strongly that their children have a right to their parents, under the UN Convention on the Rights of the Child.

“It’s not a crime for a disabled person to have a child,” says Karen.

They feel that at the heart of the HSE’s inability to advocate for that right has been a confusion of their neurological disability with a psychological one – the perception that their disabilities are causing the children’s problems.

It is distressing to hear of Damon rushing out of a HSE care planning case conference on the children, and tripping over a chair, because, as he says, “I had to get my head out of there”.

This is an obvious case of “sensory overload”, and was likely to happen to any autistic person in a crowded room. But the couple worry that it was seen as violent and aggressive.

“It is an impossibility for him to have negative emotions,” explains Karen. “He’s not built that way.”

What appears to be a confusion between neurological disability and psychology has meant it has been a huge struggle to get the children diagnosed with autism spectrum disorders. Again and again, their parents’ disability has been seen as the reason for the children’s atypical behaviour.

A senior clinical psychologist screened Daniel, then aged three, and concluded: “While he clearly has a developmental delay, it is difficult to distinguish whether this child’s presentation is due to a developmental disorder such as ASD or a combination of a developmental delay, disrupted living environment/attachments (foster care placements, etc) his parent’s pathology and subsequent organisational difficulties . . . and/or parental preoccupation with pathology.”

The Wises spent a decade trying to get autism diagnoses for their children. Michael eventually got a diagnosis, of Asperger’s Syndrome (a mild ASD), when he was nine. Eve was diagnosed with Atypical Autism and developmental delay when she was 10. Daniel was diagnosed with an unspecified ASD at seven. It might seem strange that parents would want a diagnosis of an incurable disability – but the State won’t give assistance with a disability unless you can prove you have it.

The difficulty the Wises had getting their children’s diagnoses is all the more surprising when you consider that both parents have autistic spectrum disorders and autism is extremely heritable.

Dr Louise Gallagher of Trinity College Dublin is part of the Autism Genome Project, a in which 50 institutions worldwide are studying the genetics of autism. She says if there is one ASD diagnosis in a family, the immediate family has a 30 per cent chance of having features of autism, if not a full-blown ASD. The children of two autistic parents would certainly have a “high risk” of having an ASD, but she is not aware of any research which would quantify that risk.

Damon can see autism running right back in his family. One relation underwent ECT and a lobotomy: “They left him paralysed, feeling the pain but unable to communicate it,” he says.

International best practice, supported by Irish Autism Action, suggests an autism diagnosis should be made within six months of presentation. Michael got one after five reports over six years; Eve, after four reports over seven years; Daniel, after four reports over five years. Some of the clinicians who wrote the reports were working for the Mid-Western Health Board or HSE and some of them were working privately. The diagnostic criteria being used is not always clear. The HSE does not comment on individual cases but makes the point that it will soon publish a National Review of Autism Services.

Professor of Health Systems at Dublin City University, Anthony Staines is working with Irish Autism Action on a prevalence study to see how many autistic children there are in Galway, Cork and Waterford.

It’s not an easy job, he says. There are multiple difficulties in the diagnosis of autism. There is no “simple diagnostic test”. Those that exist – ADIR (Autism Diagnostic Interview – Revised) and ADOS (Austism Diagnostic Observation Schedule) – require a lot of practice to administer.

Staines says standards and procedures for autism diagnosis are better than they were a couple of years ago, but still have a long way to go. There needs to be more staff, but also “the right staff with the right mix of skills”.

He says the HSE lacks appropriate information structures, management structures and organisational structures “to understand what it’s doing and to improve . . . There’s very little mechanism for learning from mistakes.”