Schrodinger's Children: How  paperwork can throw the diagnosis of ASD into limbo.

It can take years for a family to secure a diagnosis of Autistic Spectrum Disorder (ASD) for a child. During the time between referral and diagnosis, the child inhabits a kind of diagnostic Schrodinger-esque hinterland, existing as both undiagnosed and diagnosed, with the family and teachers often continuing to challenge rather than manage behaviours exhibited by the child until the diagnosis is formal.

Julie, a mother to two teenagers who have both been through the diagnostic process, is currently awaiting the results of her younger daughter, Isobel's, assessments for ASD. Her older daughter, Megan, received the diagnosis six years ago, aged eleven. The process had taken three years.

Julie points out that Megan's wait was due to a combination of county-specific things, not least being that the final jigsaw piece at the time - a psychiatric assessment - could not be conducted because, at that time, there were no psychiatrists available in her county. However, one of the more frustrating delays was a result of the lacklustre liaison between Megan's school and the paediatrician's clinic in completing a form known as the ASRS (The Autism Spectrum Rating Scales). Today, Julie works with parents who are seeking an ASD diagnosis, and feels strongly that this indifferent approach to completing the form persists. "The ASRS, which could have been completed in a matter of hours for Megan, is still, six years later, taking months, unless parents have the confidence and tenacity to ignore media reports of teacher workload, and motivate teachers to complete it."

Once a referral of suspected ASD is made to a paediatrician's clinic, there are several investigative jigsaw pieces that need to be conducted so that a picture can be built of the child's behaviours. These jigsaw pieces secure qualitative and quantitative data through questionnaires and observations. The ASRS form, sent to the child's school, is only one of those pieces, but its delay can impede the whole process.

Should any of the completed questionnaire forms prove inconclusive, further tests can be ordered by the paediatrician such as the BOSA (Brief Observation of Symptoms of Autism) which involves observed play between the child and parent and which can take an hour to complete. A diagnosis of ASD is, rightly, not easily or lightly secured and, without all parts of the jigsaw, a paediatrician will not diagnose, no matter how repetitive, eye-averting and monotonic the behaviours of the child might be in their clinic. In Megan's case, the last missing bit of the jigsaw was the school's ASRS form.

Julie's voice is brittle as she recounts her efforts to tweezer this form out of the school. "The completion of this one thirty minute ASRS form took three attempts, spanning two years. The liaison for securing this form is between the clinic and the school; the parents are, as they should be, uninvolved in securing the data because it needs to be objective and unbiased. But because of this, arguably the most invested, pro-active and efficient cog - the parent - is removed from the logistics."

During the years of her diagnosis, Megan had been attending a middle school in a three tier system. When the first ASRS form was sent from the paediatrician's clinic to the SENDCo (the school's Special Educational Needs and/or Disabilities Coordinator) in July of Year Five, Megan had been at the school for one academic year. "The SENDCo had then passed the form to Megan's form tutor. The form tutor was the obvious choice as they delivered much of the year five curriculum and so would see the same child regularly. The summer holidays were approaching so, knowing that the clinic had sent the ASRS questionnaire to the school, I contacted Megan's form tutor in the hope of nudging him into completing it before the schools broke up."

Megan's form tutor did return the ASRS form to the clinic before the summer holidays. However, in a decision that was to cost Megan years, he had not answered all of the questions. It was therefore incomplete, and useless for diagnostic purposes. In a strained phone call from Julie to the form tutor, the form tutor's explanations for having submitted it unfinished were plentiful:

• Julie had contacted him in July to express her hope that he could complete it before the summer holidays, which had given him 'only' a few days.
• He had moved to working only part time.
• He did not know Megan well enough to complete the form.
• He had, "Even gone around the staffroom asking staff" if they could help him fill the form in, but no-one had offered.
• Because Julie had asked that the form be posted before the summer break, he had therefore done what she had asked.

Julie's memories from this period are sharp and unforgiving. "I cannot understand the levels of indolence and indifference that were at play for him to not complete, for a ten year old little girl in his charge, a form that could change her life. When faced with the wall of silence from staff unwilling to help, his solution was to give up rather than to persevere for her."

A second ASRS form was sent from the paediatrician's clinic to the school. Julie, aware of this, describes her ambivalence. "I was still reeling from the ineptitude of Megan's form tutor. On the one hand I wanted to make an appointment with the school, stand over someone whilst they completed the form, and then hand-deliver it to the clinic. On the other hand, I did not want to be That Mum." The form was completed, this time by the SENDCo, and returned to the clinic.

An appointment with the paediatrician months later revealed that, incredibly, this second submission of Megan's teacher assessment form had also been unusable. "The SENDCo had decided, bafflingly, to split the form between four different members of staff." This was, he had explained afterwards with happy disregard for how events had transpired the previous year, 'the way' he processed 'these forms'.

A third ASRS form was sent from the clinic to the school.

This time, an emotionally bruised Julie sought for herself a teacher who both knew Megan and had a vested interest in avoiding an official complaint. Julie took time out from her work, drove to the school, waited for the teacher to complete the form, drove the eleven miles to the clinic to hand-deliver the form, and then drove the nine miles back to work. Megan's diagnosis arrived weeks later.

The failings of the system at Megan's school led to a young girl being, for three years, misunderstood, withdrawn and unsupported. "She hadn't known how to navigate friendships. She had passed grade five piano aged eleven but did not dare to join the orchestra. She became the U15 county 800m champion, yet hadn't been allowed onto the school athletic team because she had missed the trials. She had learnt to withdraw in an attempt to blend." Dismissed as 'under the radar', she was, in fact, 'autistic' and would have always needed encouragement to blossom.

Significantly, Julie's experiences highlight how parents don't know how to, or don't dare to, secure a teacher who knows their child well enough to complete such a vital piece of evidence for paediatricians.

Julie now liaises regularly with parents struggling through the process, and recognises in them the lack of understanding that she herself had demonstrated regarding the importance of the ASRS form and, crucially, how determined the parent needs to be in targeting the right teacher for the job. "One parent in an upper school had had the ASRS form sent to her daughter's year head. However, this year head was a year head of four hundred students. He did not know her daughter, and so he had passed the form on to a Pastoral Support Officer. The PSO had then photocopied the ASRS form (with the shading so dense that only every other question could be read), and then had emailed this photocopy to the student's teaching staff. Weeks after the initial email asking for help in completing the form, it was circulated again, because nobody had responded. Not one person in the process had noted that the student had just started year 10, and so had a new timetable, with new members of teaching staff who wouldn't know her yet. The PSO was repeating the actions of Megan's form tutor, trying to scavenge information from reluctant coffee-drinkers on their break in the staff room."

In contrast, Julie describes the actions of a mother who had targeted the most appropriate teacher directly. "This mum knew that this particular teacher had raised concerns about her son's tendency to withdraw, so the awareness was already there. The teacher also had a reputation for efficient communication. The mum emailed the teacher directly, asking for her support in completing the ASRS form. The form was sent in with her son the next day, and that very same day it was in the post to the paediatrician's clinic, paid for to secure guaranteed next-day delivery."

Whilst Megan is now thriving in her A levels and looking to study mathematics at university, Julie's younger daughter, Isobel, inhabits that Schrodinger hinterland awaiting the decision of the paediatrician regarding her own ASD diagnosis. Ironically, the initial referral came from the same middle school SENDCo who had been instrumental in haphazardly stalling Megan's. "He's still a bit confused in his process," says Julie, phlegmatically. "In his assessment, he had written that Isobel, 'Goes under the table.' When the paediatrician read this out to me, I was alarmed - was my child actually roosting on the floor during lessons? The paediatrician thought that this is what the SENDCo had meant, too. When I phoned the SENDCo that afternoon to ask if things really were that bad, he shrugged it off with an, 'Oh, no - I just meant that she slumps down into her chair a bit.' Apparently "Going under the table" is a parochial saying, particular to that school. You couldn't make it up."