autistic spectrum disorders ( asds ) are developmental disorders estimated to affect 1 in 150 children .
increasing professional awareness has led to higher levels of diagnosis and support , possibly explaining the recorded rise in prevalence over the last 30 years .
asd is commoner in males ( m  :  f autism 4  :  1 , aspergers 10  :  1 ) .
genetic factors are complex , and no single gene mutation or chromosome abnormality has been linked , although the condition has the highest heritability of any psychiatric disorder ( approximately 90% ) ; the risk of having a second child with autism is increased by 2030 .  
the national autism plan for children ( napc ) emphasises the importance of early intervention and close collaboration between parents and professionals and provides a gold standard for services .
benefits for parents include increased capacity to seek information from external sources and make use of available health services .  
this service involved sessions from child and adolescent psychiatrists ( cap ) , community paediatricians ( cp ) , camhs practitioners , specialist speech and language therapists ( salt ) , and educational psychologists ( ep ) .
in addition to the core symptoms , there are other common features , such as abnormalities in sleep and mood . for a diagnosis of asds to be made
if there are concerns during developmental screens , specific screening for autism is strongly encouraged .
most commonly used is the autism diagnostic observation schedule ( ados ) ; however not all characteristics may be demonstrated during the test .
difficulties can become more apparent when changes in routine occur , for example , starting a new school , and this is often when children are referred .
the diagnosis of autism , however , is often not made until 2 to 3 years after symptoms are recognized .
there are considerable demands on parents as they accept and adjust to their child 's communication and social interaction impairments .  
many people seek information on their own , from other parents , websites , books , and autism groups and newsletters .
children and families want accessible mental health services which provide support when needed and involve them as users .
they also want to know what services are available to help them support their child .  
the napc guidelines address identification , assessment , diagnosis , and access to early interventions for children with asds .
stage 1 is a general multidisciplinary developmental assessment for any child with possible developmental problems .
the assessment should be completed and fed back to the family within 17 weeks of referral .
the napc states that feedback to parents should include information about services , for example , the national autistic society ( nas ) . in manchester , all scait professionals receive training in assessing asds .
referrals from educational psychologists , health visitors , and school nurses are accepted if the general practitioner or a paediatrician is informed .
parent intervention programmes can enhance interaction with children , promote development , and increase parental satisfaction and mental health .
scait offers five 2-hour sessions : understanding asd , understanding and managing behaviour , understanding and working with the education system , enabling your child 's communication and understanding , and further resources for you and your child .
to assess parental satisfaction with scait assessments and compare the service with the napc guidelines .
parents and carers of the 35 children diagnosed with asds from december 2008 to may 2010 were invited to participate .
participants were invited to have a telephone or face - to - face alternative to complete the questionnaire .
a previous manchester audit tool was enhanced to provide further information about the postdiagnostic group ( appendix 1 ) .
questionnaires were scored according to total satisfaction , and satisfaction in each of the 4 areas of the assessment process .
thirty - five questionnaires were posted , and 20 ( 57% ) parents participated , with 1 father responding . of the 20 participants , 1 parent completed the interview via telephone and the other 19 returned the questionnaire by post .
the child 's age at diagnosis and the present time showed 2 peaks ( figure 1 ) , consistent with transition to primary and secondary school .
most parents ( 86% ) were especially satisfied with the assessment process ( table 1 ) , but less happy with the information received before and after the assessment .  
most parents felt they were well informed about the assessment before the appointment , with 65% receiving information .
however , 14 would have liked to have known the different parts of the process , and 8 wanted to know the questions they would be asked . about half of parents would have liked to have known the name and professional background of the clinician ( table 2 ) .
nineteen parents felt they were definitely listened to carefully , with the final patient choosing yes to some extent .
additionally , 18 parents felt they were able to discuss their concerns and give feedback at the time of assessment , and 80% felt the assessment could not have been communicated differently .
the family who needed an interpreter reported that the information they were provided with before the appointment was very poor , although they believed the actual process was good .
notably , 85% of parents would have liked a letter with a plan for further assessment and appointment dates .
most parents had received a report which 65% claimed to definitely understand , with 20% understanding to some extent .
eighteen parents had the opportunity to give feedback at the time of the assessment . however , 59% stated they either did not have any say or only to some extent .
all of the parents said they were able to ask questions at following meetings . with regards to the postdiagnostic workshops , 8 parents received information regarding the aims . when parents are invited to attend the sessions , written information about the course is also sent with the letter .  
every respondent was happy with the assessment process , with 60% reporting it to be very good , 100% of parents said they were definitely treated with trust and dignity .
after the assessment , 100% of patients were happy with the level of information they had regarding the process .
although 18 parents received additional information in some form , 6 felt they had not received enough information about the condition and future interventions .
with regards to the postdiagnostic workshops , only 15 parents said they were invited to attend . the reasons for this were not explored , although one patient did report moving house .
when asked why they were unable to attend , childcare was a key theme as was timing . looking at the time interval from referral to diagnosis , great variance was apparent ( figure 2 ) .
the average time was 46 weeks with only 6 diagnoses reported in the recommended time frame of 17 weeks .
of note , the child with the shortest timeframe from referral to diagnosis was the least satisfied , while the longest timeframe elicited the highest satisfaction score .
the results show 2 peaks , with satisfaction higher at the times of school transition ( 35 and 1012 year olds ) .
one weakness was size , although sampling the past 18 months allowed the collection to be achieved within the allocated timescale .
if the study was increased to the past 3 years , the results may show a more significant trend , although parents might find the process harder to recall .
parents wanted more information regarding diagnosis and management . a longer follow - up appointment after diagnostic feedback
could allow needs to be individually assessed . during this appointment , professionals could discuss the purpose of the postdiagnostic workshops .
the information provided during these workshops is obviously most beneficial when attending the group sessions , as they are interactive and parents have the opportunity to share experiences and strategies . however , if all parents received the written information provided within these sessions , it would be helpful to those who could not attend . as childcare and timing
were the commonest reasons for nonattendance , this could be addressed by combining all 5 sessions into 2 days within school hours . written communication could be enhanced by a standardised response letter from the scait team .
this could include the role of scait , the purpose of the assessment , the appointment time , the assessment structure and timescale , the name and profession of all clinicians , and possible question areas .
this should help ease parent 's anxiety and ensure that scarce appointments achieve maximum benefit .
the initial page should contain a standardised format with the outcome clearly stated , the individuals and professional roles of those involved , and the date of the diagnosis .  
although , most parents were happy with the assessment service , satisfaction could be increased by providing more information about the assessment as well as the condition .
it is important to actively involve parents in the sessions , allowing them to build a trusting relationship with the health professionals involved as children may need support from the team for many years .
giving each family the time to discuss their concerns will also help tailor individual needs and further increase parental satisfaction .
the fact that parents are considerably more likely to have a second child with asds emphasises the importance of engaging families .
the study was fed back to scait , and standardized letters and workshop information sheets have already been implemented . furthermore , the team will complete the audit loop by undertaking the audit again in 18 months time .
this study has provided a key opportunity to offer a value - added service with service - user feedback .
 
 background . user feedback is now an integral part of both clinical governance and service development , and it also provides a key route to engaging parents and children . 
 autistic spectrum disorders ( asds ) can impact on all members of a family , and close working between parents and professionals is essential . aim . to explore parental satisfaction rates and identify areas in need of improvement . method . 
 a postal survey was completed by parents whose children had been diagnosed with an asd in the past 18 months in a manchester child and adolescent mental health service . 
 the national autism plan for children was used as a gold standard . results . 
 parents were particularly satisfied with the way team members dealt with them and their children during appointments . 
 however , the standard of written information provided about the condition , diagnosis , and support available could be improved . 
 the findings show the benefits of receiving a diagnosis in the recommended timeframe . 
 discussion . 
 we discuss ways of effectively using scarce resources . 
1. Introduction
2. Aim
3. Method
4. Results
5. Discussion 