Information about numbers

There have been longstanding concerns about the lack of reliable national information regarding the number
of disabled children and young people,and the types of disability they may have.

The National Service Framework for Children, Young People and Maternity Services (NSF, 2004) has as a
requirement that ‘a multi-agency database containing  core data on disabled children, based on shared and
agreed definitions’

The All-party Parliamentary Group on autism (2007), which researched the implementation of the NSF, found that authorities have not yet met the requirements of a multi-agency database.  The estimates of disabled children reported by each local authority varied hugely, between 80and 5,000.  It questions the value for a voluntary register, as many respondents believe d their official figures to be an under estimate. 

The number of children with autism varied from 98 to 1.275.  Again, this likely under estimate the true figure
if taken from SEN data, as some children’s needs may not have been assessed or met at School Action Plus or via a
statement of special educational needs.

Aiming high for Disabled Children (2007) recognises the need for more robust information regarding disabled children including those with Autism Spectrum Disorder. ‘A clearer picture of the disabled children population and disabled children’s needs at alocal level is essential for effective planning, commissioning and provision of services.’

Investigation into a number of pieces of national and international research into the prevalence of autism spectrum disorder carried out by Evans, Castle and Barraclough found that the prevalence of ASD varies between 3.3 - 16.0 in every 10,000

“The prevalence of autistic spectrum disorders is a matter of debate....  There are a number of serious problems with calculating prevalence rates and predicting future demand for services. One is that rates and types of diagnosis vary widely between health authorities and also between individual paediatricians and other diagnosticians. Secondly, the definitions and diagnostic criteria for autism are fluid and qualitative in nature, relying primarily on the observation and categorisation of behaviour; thus there is the possibility of both under- and over-diagnosis”. Evans, Castle and Barraclough (2001).

Findings from research across the West Midlands region, for the purpose of this project, similarly found that there was a lack of consistency across the authorities including some who did not know the size of their disabled children population.

Additionally, gathering information regarding those children and young people who have autism spectrum disorder, and more specifically those with severe ASD and BESD proved an impossible task.  Therefore there has been a need to rely upon population numbers and prevalence rates in order to produce the following information, based upon the total population of children and young people (fig. 1). 

Fig 1
Total Population of Children and Young People aged 0 to 24 years in the West Midlands Region

(mid 2005 population estimate – Office of National Statistics)

Area	Persons Aged 0	Persons Aged 1-4	Persons Aged 5-9	Persons Aged 10-14	Persons Aged 15-19	Persons Aged 20-24	All Persons Aged 0-24
Herefordshire	1700	6900	10300	11400	10900	7600	48800
Stoke-on-Trent	3200	10900	13600	14700	16600	18100	77100
Telford and Wrekin	2000	8000	10700	11400	11400	9700	53200
Staffordshire	8600	33900	47600	52200	53400	46900	242600
Warwickshire	5700	22300	30700	32500	32300	28400	151900
Birmingham	15600	56200	67800	69300	76000	92000	376900
Coventry	3900	14200	18300	19500	23000	28500	107400
Dudley	3500	13700	17900	19900	19700	16700	91400
Sandwell	4000	14800	18000	19400	19600	18200	94000
Solihull	2100	8500	12600	14300	13700	10700	61900
Walsall	3300	12900	16700	17300	17400	15500	83100
Wolverhampton	3100	11200	14000	15600	16200	16300	76400
Shropshire	2900	11300	16500	18500	19100	13500	81800
Worcestershire	6000	23300	32200	34900	34400	26700	157500
West Midlands	65600	248100	326900	350900	363700	348800	1704000

The National Autistic Society states that the ‘best estimates of the total prevalence of autism spectrum disorders are those based on studies that focused on the whole spectrum and not just specific sub-groups.  The indication from recent studies is that the figures cannot be precisely fixed, but it appears that a prevalence rate of around 1 in 100 (1%) is a best estimate of the prevalence in children. No prevalence studies have ever been carried out on adults. ‘

Due to lack of reliable information about the number of children and young people with Autism Spectrum Disorder and BESD from existing databases, it has been necessary to use population estimates and prevalence rates as indicated by the National Autistic Society. (Fig. 2)

Although this methodology provides an estimate of the number of children and young people within the West Midlands who have Autism Spectrum Disorder, the numbers cannot be assumed to be completely accurate. This does not specifically identify those people with severe ASD and BESD.

Fig 2

Area	All Persons 0-24	ASD Population
Herefordshire	48,800	488
Stoke-on-Trent	77,100	771
Telford and Wrekin	53,200	532
Staffordshire	242,600	2,426
Warwickshire	151,900	1,519
Birmingham	376,900	3,769
Coventry	107,400	1,074
Dudley	91,400	914
Sandwell	94,000	940
Solihull	61,900	619
Walsall	83,100	831
Wolverhampton	76,400	764
Shropshire	81,800	818
Worcestershire	157,500	1,575
West Midlands	1,704,000	17,040

Based upon population estimates and suggested prevalence rates this indicates that approximately 17,040 young people in the West Midlands aged 0-24 have Autism Spectrum Disorder

Fig 3 Pie Chart to indicate numbers of young people with ASD in the West Midlands

(based on Population estimates and recent prevalence rates)

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