Monday, September 7, 2009

PCT apologises for delays over autism diagnosis

THE dad of an autistic boy has criticised Swindon Primary Care Trust for the time it took to diagnose his three-year-old son.

Iain Counsel was finally told his son was autistic in June – almost two years after he first appealed to Swindon PCT to assess three-year-old Scott for signs of the condition.

Caroline Fowles, chief executive of Swindon PCT, has apologised to the family.

Responding to a letter Mr Counsel sent in January this year, chief executive of Swindon PCT Caroline Fowles apologised for a catalogue of delays between appointments.

In her letter, Ms Fowles said: “I would like to apologise that your experience of the service, both in terms of time delay and then engagement, was not satisfactory and that this added to your anxieties in wanting to achieve the best for Scott.”

Mr Counsel, 37, of Langford Grove, Old Walcot, claimed that delays over the diagnosis has robbed him of two years of vital developmental treatment. He said: “As far as I’m concerned they have robbed my son of his first words.

“With a diagnosis and subsequent treatment I have no doubt we would have seen even small signs in communication from Scott by now. Instead he’s a four-year-old who talks in grunts and screams.”

Mr Counsel started to suspect something was not right with Scott when, at 20 months, he still had not taken his first steps or formed his first word.

“I just noticed he wasn’t developing half as quickly as his peers,” he said. “While other children were saying ‘mamma’ and ‘dadda’, Scott was communicating through noises.”

Mr Counsel waited five months for an appointment with Scott’s paediatrician. The doctor revealed suspicions in her notes that Scott had autism at her first meeting with the family on December 18, 2007, but had not shared them with his concerned parents.

Mr Counsel said: “It is disgusting. As a parent you would sooner have bad news than no news at all and as far as I am concerned it was the doctor’s duty to keep us informed.”

Mr Counsel said he is also furious that Scott’s doctor had discussed his condition with a receptionist, inviting her to make her own comments.

In a paragraph written by Scott’s doctor, she said: “The receptionist reported that Scott was on the go the whole time, with his parent running round after him to try and keep tabs on him.

“He was into everything and explored the room. He came round behind the receptionist’s desk and sat on the floor next to her and as she was talking to him, looked up at her.”

Mr Counsel said he was incensed by the inclusion of the observations in his son’s medical notes. He said: “Is she a doctor? Is she a autism specialist or a child psychologist? No.

“So why the hell are her observations included in my son’s medical history.

In March this year, Scott was given a Sadler Assessment, a process designed to monitor a child for signs of autism. His anxious parents had their suspicions confirmed on June 26 – almost two years after they first flagged up their worries.

Mr Counsel now hopes to meet Ms Fowles to raise wider concerns. He claims that since Scott was diagnosed with autism, the PCT has offered no support or advice regarding potential treatment.

Mr Counsel is now awaiting confirmation for a date to meet Ms Fowles.

Caroline Fowles, chief executive of Swindon Primary Care Trust, said: “The health and well being of our patients is our key focus, and we take all concerns from service users very seriously and conduct thorough investigations.

“In this instance, however, we have apologised to the family that the appropriate care and support for their son and the delay it took to receive an appointment was unacceptable.

“We also recognise there is learning for a number of our professionals involved. We have built this into a forward programme and we are committed to an improvement plan to ensure we learn from this experience.

“We have met with the family on a number of occasions to explore their concerns about their son’s care and the PCT needs to examine these further.

“PCT staff continue to work alongside their other professionals to ensure the right level of support for Scott and this will main our prime focus.”

Autism screening tops Obama’s medical to-do list

By Nancy Shute U.S. News & World Report

Autism is the only disorder or disease mentioned explicitly in Obama’s 24-point agenda on . Heart disease and cancer don’t get the call. Neither does diabetes, or other chronic diseases.

But there are four hefty bullet points addressing autism. Obama called for:

1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.

2. “Life-long services” for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.

3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.

4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren’t diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.

That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.

The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn’t appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president’s inaugural address won’t mean big cuts in funding.

Still, universal screening for autism will be a huge challenge. There’s no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills.

The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. But many doctors don’t get around to doing those screens, and until very recently the recommended tests weren’t sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.

Disclosing the best kept secret of autism

What’s the best-kept secret of autism? Well, it may very well be the one that you’re keeping. Whether you’re a parent of a child with ASD, or someone with autism the debate rages on: “Should I tell others about my/my child’s autism, or not?”

From the parent’s perspective – at least upon initial diagnosis – the tendency tends to swing to the “tell” side. In fact, more so than tell, even broadcast to anyone met. This is often the case, as when a parent first receives the diagnostic news there is shock, grief, lack of understanding as to what it might mean for their child, creating a need to outreach to anyone and everyone for support, for answers.

Fast forward a few years, and past the initial shock. While some parents continue to share their family’s news widely, many others begin to pull back, not wanting to generate negative stigma for their child (or themselves). “Sure, my son’s behavior might seem ‘strange’ to others, but it’s none of their business.”

As those children grow into their teen years and adulthood and for those adults diagnosed later in life, there are more difficult decisions. Does disclosure open up the flood of discrimination – whether overt or less seen – among peers? Among fellow employees? To one’s employer?

Some adults are loath to mention anything about their autism in the workplace. “Let them think I’m shy, quirky, not social. But at least I can stick to the job at hand and get it done; who cares about interpersonal interaction.” In some cases, those people taking this stance find that their silence impedes their abilities to get promoted; they find that their self-isolation keep them from any visibility at all to their employers and they’ve become anonymous.

Others opt to disclose to their colleagues or employers and are greeted with a desire to understand and support, making allowances for job responsibilities better suited for their needs. Some even offer to help “practice” social skills or provide mentorship in navigating through the often perplexing NT world. Others, unfortunately, find the invisible stigma once they’ve disclosed follows them throughout their workplace.

There clearly is no one answer, and the success individuals have in any of these options is as varied as the individual.