Article

A register study of life events in young adults born to mothers with mild intellectual disability Ida Lindblad Gillberg Neuropsychiatry Centre, Sweden

Eva Billstedt

Journal of Intellectual Disabilities 2014, Vol. 18(4) 351–363 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514552150 jid.sagepub.com

Gillberg Neuropsychiatry Centre, Sweden

Christopher Gillberg Gillberg Neuropsychiatry Centre, Sweden

Elisabeth Fernell Gillberg Neuropsychiatry Centre; Skaraborgs Hospital, Sweden Date accepted: 15 August 2014

Abstract Background: Young adults, born to population-representative mothers with intellectual disability (ID), were targeted for psychosocial/life event follow-up. Methods: The whole group originally comprised 42 individuals but 3 had died and 1 had moved abroad. The remaining 38 were approached and 10 consented to participate in an interview study. However, of the remaining 28, it was not possible to establish contact with 21 who were instead searched for in various official registers. Results: Most (n ¼ 18) individuals in the study group had been in contact with different authorities and clinics. Of the 21 individuals, 10 had contact with social services since childhood and 4 of these had been taken into care (foster family) and 6 had had contact families during childhood. One individual had been taken into a treatment centre and one grew up mainly with the father. Altogether 12 (57%) of 21 individuals did not grow up full-time with their biological mother. Twelve (57%) had major neurodevelopmental/neuropsychiatric conditions, including five with ID and seven with attention-deficit hyperactivity disorder (ADHD). Four individuals were registered within the Prison and Probation Service due to various types of crimes. Conclusion: Individuals born to mothers with ID in our study group were at high risk of adverse experiences and negative outcomes, such as increased childhood mortality, a relatively large proportion of children taken into care, high rates of ID and ADHD in the children and of criminality in young adulthood. Taken together with the results obtained in an in-depth interview study of those in the originally targeted sample with whom it was possible to obtain contact, the present findings suggest that it will be important to provide early support and longitudinal developmental follow-up in groups of children growing up with a mother with ID. Children in this situation appear to be at a number of risks, probably related both to hereditary factors and to social disadvantage.

Corresponding author: Ida Lindblad, Gillberg Neuropsychiatry Centre, Kungsgatan 12, Gothenberg 41119, Sweden. Email: [email protected]

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Keywords mild intellectual disability, mothers with ID, foster care, neglect and abuse, neurodevelopmental/ neuropsychiatric conditions

Introduction Most individuals with intellectual disability (ID) who become parents test in the IQ 50–70 range (Bager, 2003) but will nevertheless have cognitive problems significant enough to cause adaptive limitations and impact on the capability to raise a child (Coren et al., 2010). In the study by Bager (2003), consisting of 41 mothers with definite ID, registered within the board for provision and services to the mentally retarded, 40 had mild ID and 1 a moderate ID. The number of parents with ID varies widely. Willems et al. (2007) found that parenthood occurred in 1.5% of persons with ID in the Netherlands. Ten years ago, a survey of children of mothers with ID was performed in a Swedish county with 275,000 inhabitants (Bager, 2003). The mothers were registered within the county authorities responsible for supporting people with ID. The prevalence of women with ID was at least 1.1% of the female population. Based on the total child population in the study area, the prevalence of children born to mothers with ID was 0.14%. However, reasons for a higher true prevalence were discussed. It was emphasized that these children often grew up in an environment of insecurity and understimulation, and therefore a large proportion had been taken into care. Moreover, their fathers often suffered from psychosocial problems. In another Swedish study (Weiber et al., 2011), it was reported that each year approximately 0.21% of the general population of children were born to women with ID. The incidence in Sweden is estimated to be about 225 new children each year, and at any one given time there would be about 4050 children (aged 0–18 years) in Sweden born to mothers with ID. An increased risk of socio-economic disadvantage has been found among mothers of children with ID (Emerson and Hatton, 2007). Factors associated with ID in adulthood are low socioeconomic status, unemployment and social isolation/exclusion. These aspects have been raised with regard to parenthood by Tarleton and colleagues (2006) and by Strømme and Magnus (2000) reporting that low socio-economic status has been found in a higher prevalence among parents of children with mild ID than among parents of children with more severe ID. In another study, socio-economically disadvantaged women had at least a fivefold increase in the risk of having a child with mild or moderate ID (Leonard et al., 2005). Parents with ID face problems that make parenthood more difficult (IASSID, 2008). Individuals with ID are more often exposed to poverty and prejudice and may also have other disabilities. Llewellyn et al. (2003) examined mothers with ID and their health status and found them being at risk for poor health. Parents with ID have also been found to report higher levels of stress, depression and poorer mental health than parents without ID (Feldman and Walton-Allen, 1997; Tymchuk, 1994). Mothers with ID are often socially isolated (Llewellyn and McConnell, 2002), which accords with findings of more restricted social support networks in parents with ID (Feldman et al., 2002; Llewellyn and McConnell, 2002). Parents with ID often need to learn a set of skills related to parenting, that is, health care, how to stimulate the child’s development and handling child problem behaviour (Tymchuk, 1992; Tymchuk and Feldman, 1991). There are many rapidly changing situations that the mother needs to adapt to and that require new decisions. The ongoing development of the child can also be challenging in different periods. Several studies (Feldman, 1994; Wade et al., 2008) have shown

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that parents with ID can learn and maintain parenting skills but unfortunately the effects of the interventions on child outcomes have seldom been considered (Wade et al., 2008). A supportive factor for parents with ID has been identified as having access to formal or informal social supports (IASSID, 2008). In a review (Tarleton et al., 2006), dealing with issues and positive practice in supporting parents with learning difficulties and their children, several aspects of effective support were emphasized. These were found to involve a wide range of strategies, such as early identification of parents with learning difficulties, support during pregnancy, assessment of support needs, skills training, help at home, parenting groups and flexible support to meet families’ individual and changing needs. In ID as well as in other neurodevelopmental disabilities, there is a high rate of coexisting developmental/psychiatric disorders, including attention-deficit hyperactivity disorder (ADHD) (Emerson, 2003; Lindblad et al., 2011; Simonoff et al., 2007). Ahuja and collaborators (2013) reported that children with ADHD and mild ID appeared to be clinically typical of children with ADHD except for even higher than expected rates of coexisting conduct disorder (CD). Feldman and Walton-Allen (1997) found that children born to mothers with ID had a higher prevalence of ID, CD, hyperactivity and emotional disorders than children born to mothers without ID. Keltner et al. (1999) examined the developmental status of children of mothers with intellectual limitations (IQ < 75) and compared findings with a group of mothers without such problems and controlling for the effect of poverty. They found that 42% of the children of mothers with intellectual limitations had a developmental delay at the age of 2 years, whereas the corresponding rate was 12% in the comparison group. In a Canadian study, Feldman and Walton-Allen (1997) studied women with ID and found that 36% of their children met the IQ criteria for ID at school age (i.e. IQ < 70). Children born to mothers with ID had a mean IQ of 80.5 compared to a mean IQ of 102.9 among children with mothers without ID. James (2004) discussed the risks to children of parents with learning disability/ID, genetic risks and risks related to environmental influences such as neglect and abuse, the latter more likely to be associated with mothers’ partners or relatives. The author emphasized that risks could be reduced when parents have access to good family and social support networks and professional support, which is acceptable to them. Emerson and collaborators (2005) used a UK survey and found that 48% of the mothers with learning difficulties no longer had their children living with them. This accords well with earlier studies showing that children of parents with ID are over-represented in Australian courts (Llewellyn et al., 2003), and a high proportion have been taken into care (Gillberg and Geijer-Karlsson, 1983; Morch et al., 1997). In a recent study (Lindblad et al., 2013), young adults, born to mothers with mild ID, were individually interviewed. The purpose of that study was to obtain information about these individuals’ life histories and current situation. The group interviewed, drawn from the population-based group in the study reported above by Bager (2003), comprised only those 10 individuals (about one in four of the original sample) who responded to phone calls and/or mail and who consented to participation. This group constituted an extremely vulnerable group. We do not know how well the findings from the interviews reflected the overall situation at young adult age of the whole sample, but, if anything, we have a reason to believe that there may be more problems in the group that did not participate (Lindblad et al., 2013; Stormark et al., 2008). Those of the originally targeted group, who did not respond despite numerous attempts to contact, were the focus of the present register study. Our research

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question now was whether the results obtained in the previous interview study would be representative also in the larger register group. The overarching aim of the combined interview and register studies was to collect information from different sources that could cover some aspects of the current situation and experienced major life events in a group of populationrepresentative young adults born to mothers with ID.

Materials and methods Subjects In a southwest geographical and administrative Swedish health care region with approximately 275,000 inhabitants, all children (n ¼ 47) born to mothers with ID in the years 1986–1995 were identified (Bager, 2003). The mothers with ID (n ¼ 30) were registered with the county authorities, responsible for supporting people with mental retardation. All individuals with mild ID for whom any societal help is provided in Sweden are listed in this register. The child group was ascertained through these mothers’ registration. Almost 10 years later, in 2011–2012, 42 of these 47 individuals were 18 years of age or older and were targeted for follow-up at this young adult age. These 42 young adults were searched for in the population register, and it turned out that 3 of the 42 children had died and 1 had moved abroad. The remaining 38 individuals still lived in the study region, a county with 15 municipalities. Of the 38 individuals (25:13; Figure 1), only 17 could be reached by telephone. Of these, 7 did not want to participate (5 males and 2 females) and 10 (6 males and 4 females), representing 8 mothers, were willing to participate in the interview study (Lindblad et al., 2013). The remaining 21 individuals (14 males and 7 females), representing 16 mothers could not be reached at all; 13 had no telephone listed landline and mobile number and 8 did not answer any of 10 or more telephone calls made over a 2-month period from different ‘open’ listed telephone numbers. To get information about the current situation for the 21 individuals who had not been possible to make contact with at all, the ethics committee at Gothenburg University was contacted. A request for an anonymous search, based on security numbers and without taking any personal contacts, was submitted. Approval was given for a register study (Dnr: 238-11).

Registers The different registers provided information on social and community support, psychiatric and medical care and lawbreaking. All authorities and clinics were contacted by letter and personally. Mortality register. The three deceased individuals were searched for in this register. The unit registers all deaths in Sweden and the found causes of deaths. Social services act. The 21 individuals were searched for at social services in their respective municipality in the county. These units provide different kinds of support for children and adults, such as social assistance (economical support), foster family, treatment care and other types of family support. These units were contacted, and nine of the offices were visited personally (IL) and personal acts were studied. In one case, information was obtained by telephone. For the individual case, information was collected from childhood and onwards.

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42 Born to women with mild ID 1986–1993

3 Dead (7%)

1 Moved abroad

38 Contacted by letter (including two reminders)

13 Had no listed landline or mobile telephone

8 Gave no response to more than ten telephone calls over two months

21 Not reached by telephone included in register study

17 Reached by telephone

7 Declined to participate in the interview

10 Participated in the interview study

Figure 1. Flow chart showing the procedure of the contacts with the individuals in the study.

Information could only be obtained if individuals had had contact with the social service within the last 5 years. According to the National Board for Health and Welfare, the personal acts should be destroyed 5 years after last contact. Act concerning support and services for persons with certain functional impairments. This unit provides support for children and adults with different kinds of disabilities. The individuals in the study group were searched for in their respective municipality. Nine of the offices were visited personally (IL), and personal acts were studied. In one case, information was obtained by telephone. For the individual case, information was collected from childhood and onwards. Social insurance office. Adults unable to work are supported by a national social insurance office. This unit provides economical support and has a national register. A search regarding all individuals in the study group was performed.

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Child psychiatry service. This unit provides support for children and adolescents up to the age of 18 years. Child psychiatry service has a register/file system covering the entire county. Personal acts were searched for all 21 individuals. Adult psychiatry service. Adult psychiatry service is responsible for adults above the age of 18 years. This unit has a register/file system covering the entire county. All individuals in the study group were searched for in the register. Medical clinic. The register is located at the main hospital in the county and covers visits for adults. All 21 individuals were searched for. Swedish prison and probation service. This unit is a national register, covering all persons convicted for a crime that has given any of the following sentences; namely prison, probation or sentenced to community service. An individual will also be registered if the court requests for a personal evaluation before a main hearing. All 21 individuals were searched for. Results were analysed with regard to mortality, family situation, occurrence of neurodevelopmental/neuropsychiatric disorders, criminality, drug abuse and other risks.

Results Registers Of the 21 individuals, 18 had been in contact with different authorities and clinics (Table 1).

Mortality The three individuals (one male and two females) searched for in mortality register had died at birth, at 3.5 years of age and at 7 years of age. The causes of death were extreme prematurity, severe heart malformation and cerebral tumour, respectively.

Family situation From the 13 social services acts found, it was established that 11 individuals had had contact with social services since childhood and 4 of these had been taken into care (foster family). Six had had contact families (i.e. families that temporarily provide support and care to a child) during childhood. One had had contact with social services according to adult psychiatric files and had been taken into a treatment centre. One individual grew up with the father. This means that 12 of the 21 individuals (57%) were not primarily raised by their biological mother. According to the files from social services and child psychiatry, four individuals had experienced sexual abuse in their family during childhood. All individuals were abused in their home; two by an elder sibling, one by the mothers’ different men and one by the father in the foster care. Three of these themselves had ID and one low borderline intellectual functioning.

Neurodevelopmental/neuropsychiatric disorders Eleven (52%) of the 21 (9 males and 2 females) individuals had major neurodevelopmental/ neuropsychiatric diagnoses according to different registers and clinical files. Five had ID, two of whom in combination with ADHD and autism spectrum disorder (ASD), and one with ADHD

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Table 1. Outcome of individuals searched within different authorizes/clinics. Social Social Support and Support and Social Child psy- Adult psyservices services service service insurance chiatry chiatry Ind. childhood adulthood childhood adulthood office services services 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21

X

X

X

n

10

9

X

X X X X

X

X X

X X

X X

X X

X X

X X

X X X

X X

X X

X

X

X

X

X

X

X

X X

Swedish prison and probation service

X

X X X X

X

X X

X X

X

X X

6

4

7

X X X

X X X

X

9

8

4

‘only’. One individual had ASD with ADHD (and no ID), and one had ASD only (with borderline intellectual functioning). Another four individuals had ADHD without ID or ASD (Table 2). In a further three cases, information given in psychiatric records and other acts gave strong indications of ADHD. However, the disorder was not explicitly diagnosed. The five individuals with mild ID had received support with regard to accommodation and/ or personal assistance during childhood, and, as adults, they had ‘municipal supported activities’ under the act regulating Support and Services for Persons with Certain Functional Impairments or social services. Of the two individuals with ASD, but without ID, one had had support (accommodation) from Support and Services for Persons with Certain Functional Impairments during childhood and one had had support from social services (youth treatment centre) during adolescence. The five individuals with ID had activity compensation from social insurance office.

Criminality and drug abuse Four (19%) of the 21 individuals (1 female and 3 males) were registered within the Prison and Probation Service due to various types of crimes; 3 for violent behaviour and drug possession and 1

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Table 2. Individuals with neurodevelopmental/neuropsychiatric disorders. Ind. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 n

ID

ASD

ADHD

X X

X

X

X X

X

X X X X

X

X

X X

5

3

7

ID: intellectual disability; ASD: autism spectrum disorder; ADHD: attention-deficit/hyperactivity disorder.

for drunken driving. All four had diagnoses of ADHD (and drug abuse). One of the four had committed more than one criminal act, and one had been admitted to prison for more than a year during which time he continued committing crimes. Another individual with the combination of ID, ADHD and ASD but without any criminal acts had had hospital care due to intoxication (alcohol).

Discussion Information about the individuals in the present sample was obtained from different registers. The original cohort had consisted of a population-based group of 38 children (not including those four who had died or moved abroad), born in 1986–1993, to mothers with mild ID in one Swedish county. The primary intention had been to interview this group as young individuals with respect to their life events and current situation. However, the group was difficult to make contact with and only 10 individuals had been possible to interview personally (Lindblad et al., 2013), while 7 declined participation. The remaining group, that is, those 21 individuals, with whom no contact had been possible to establish, comprised 55% of the original cohort. After renewed ethical approval, these 21 individuals were searched in different population registers, at the municipal, county or national level. The results of this procedure, taken with the findings from the interview

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made it possible to obtain important information about 82% (31 of 38) of the young individuals born to women with ID. We cannot conclude that the three individuals, who were not found in any of the searched registers, were without problems due to the rule that social acts are destroyed if a contact has not taken place within a 5-year period. Of the total group of 42 individuals, 3 had died before the age of 8 years, that is, 6.8%. In the same county, 0.68% of all children died before the age of 8 years, thus a 10 times higher rate of early mortality in children born to mothers with ID. Our original study group was small (42 children), and, therefore, our findings must be interpreted with caution. One of the children in our total cohort (1 (2.4%) of 41) had died in the perinatal period which is close to the findings by Ho¨glund et al. (2012) reporting an increased perinatal mortality in children born to mothers with ID compared to mothers in general (1.8% vs. 0.4%). Of the 21 individuals, 12 (57%) had not lived with their mother full-time during childhood and adolescence. Instead, they had been placed into foster care, treatment centre, contact family or, in one case, had lived full-time with their father. In the previous interview study, 4 of the 10 individuals had not grown up full-time with their mother, and in this register study, this had occurred in 12 of 21 individuals. Thus, in the total group of 31 individuals, 16 (52%) was not primarily raised by their biological mother. This finding accords with other studies, that is, by Morch and collaborators (1997) who reported that 38.5% of children in Norway born to mothers with ID were taken into care, and the study by Gillberg and Geijer-Karlsson (1983) in Sweden, who found that 44% of children born to mothers with ID had been placed into foster care. The reason in the individual case in our studies (interview and register study) was not always possible to trace but 5 of the 31 individuals reported personally or had reports in their social acts confirming that they had been exposed to sexual abuse. Children with disabilities have been found to be more than three times as likely, compared with typically developed children, to have been sexually abused (Benedict et al., 1990). Murphy (2011) highlighted that, despite this, children with disabilities are not provided with information on human sexuality or with strategies to protect themselves from sexual abuse, which makes them easy targets. Adolescents with ID need to be educated in sexuality and what parenthood means. This recommendation was also given by Bager (2005) and illustrates the need for education in cooperation with Youth Health Centres. Aunos and Feldman (2002) reported that women with ID received little education and support, both from their parents and from school, to make decisions about using contraceptives or becoming a parent. Thus, individuals with ID need education with regard to both their own safety to prevent abuse and for preparing and making it possible for them to understand how parenting would affect their future life situation. The total group (interview and register study) of 16 individuals who had been subjected to early family interventions represented families willing to receive help, according to the social service registers. According to Hindberg (2003), the Swedish system of today is based on the view that support should be optional and that the individuals themselves should initiate the contact. Hindberg (2003) also noted that the parents themselves have to be aware of their needs for help and support from social services. This view may mean that some families that do not recognize their own needs will not receive appropriate intervention from social service. A total of 11 (52%) of the 21 individuals had one or more developmental/neuropsychiatric disorders. ID was found in 24% and ADHD in 33%, thus at a considerably higher frequency than in the general population.

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Considering the study group (interview and register study) of 31 individuals, 11 (35%) had mild ID (6 in the interview study and 5 in the register study) and 9 (29%) had ADHD (2 in the interview study and 7 in the register study). Our finding is in accordance with other studies regarding the relation between ID in mothers and in their children (Gillberg and Geijer-Karlsson, 1983; Feldman and Walton-Allen, 1997). The high proportion of individuals with ID in the interview group (6 of 10) might be explained by the fact that social services initiated contact with the research psychologist in three individuals. In addition to the seven individuals with ADHD in the register study, a strong indication of ADHD was found in other psychiatric records and other acts in another three. However, the disorder was not identified or diagnosed. Rodriguez et al. (2007) discussed that there is a lack of knowledge and also difficulties in diagnosing ADHD in adults. The authors emphasized the importance of diagnosing ADHD to give the appropriate treatment. In a Swedish study (Ginsberg et al., 2010), prison inmates were assessed with regard to ADHD, and the results revealed that only 2 of the 30 individuals had been diagnosed during childhood, whereas assessments in adulthood revealed that 12 (40%) of the 30 prison inmates met criteria for ADHD. All four individuals in our study who had committed criminal acts had been diagnosed with ADHD or had clear indications of ADHD according to psychiatric records. Substance use was found in all four individuals convicted for a crime which corresponds with the findings in the Swedish study (Ginsberg et al., 2010), where substance use was reported from all individuals in the study. Studies of adults with ADHD have revealed a high prevalence of co-occurring psychiatric disorders (Kessler et al., 2006), criminal behaviour (Rasmussen and Gillberg, 2000) and of substance abuse (Kessler et al., 2006; Rasmussen and Gillberg, 2000). Lindsey (2002) has suggested that guidelines for identifying inattention, overactivity and impulsivity in individuals with ID are needed. Emerson and Halpin (2013) found that ID itself did not increase the risks for antisocial behaviour. Rather, they suggest that ID could be a protective variable. According to Ahuja and collaborators (2013), it might be that ID combined with ADHD may yield specific risks. Rose and collaborators (2009, p. 496) suggested that ‘individuals with comorbid ADHD and intellectual disability may be vulnerable to a ‘‘double deficit’’ from both disorders in certain aspects of cognitive functioning’. We have no information about to what extent this comorbidity could have occurred in the mothers in our study group. However, a certain group of their children, now young adults, exhibited these ‘double deficits’. Children born to mothers with ID may also be exposed to what has been termed ‘double hazards’, which mean both biological and environmental risks (Aylward, 2006). Willems et al. (2007) suggest a ‘balancing model’ to provide successful support for parents. They revealed several factors for positive outcome, namely the ability and willingness to follow advice, the social network and the society’s attitudes towards parenting with ID. In conclusion, they pointed out the importance of a well-coordinated support system. Tarleton et al. (2006) suggested that support should be multi-professional and multi-agency and that the priority should be to protect and provide welfare for the children. By providing ongoing support for parents with ID, the work will be both educating for the parents and preventing the safeguarding for the children. Limitations of the study include the fact that only a relatively small group was possible to search for in registers (due to ethical considerations, see above). Moreover, we do not know if we have complete information from social service acts due to the rule that acts are destroyed if a contact had

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not taken place within a 5-year period. This suggests that the rate of individuals who had not grown-up full-time with their mothers could be minimum figures. Another limitation is that we have no information about the mothers’ complete disability profile, that is, about additional neurodevelopmental/neuropsychiatric disorders, such as ADHD or ASD, and moreover, we have no information about the fathers of the children. In conclusion, we found that in the group of individuals for whom register data were searched, mortality during childhood was increased, about half the group had not grown-up in their biological home – which could be a minimum rate – near half of the group had developmental/neuropsychiatric disorders and 17% had committed criminal acts. Taken together with the results obtained in the in-depth interview study of those in the originally targeted sample with whom it was possible to obtain contact, the present findings suggest that it will be important to provide early support and longitudinal developmental follow-up in groups of children growing up with a mother with ID. Children in this situation appear to be at a number of risks, which could be related to a range of factors such as heredity, poverty, lack of social support and to neglectful care. Mothers with ID need tailored and active support, both with regard to their own difficulties and with regard to the increased risk of disabilities in their children. Acknowledgements We are grateful to Dr Bo¨rje Bager for valuable collaboration.

Funding Financial support for this work was given from the research and development centre of Skaraborg’s hospital.

References Ahuja A, Martin J, Langley K, et al. (2013) Intellectual disability in children with attention deficit hyperactivity disorder. Journal of Pediatrics 163: 890. Aunos M and Feldman MA (2002) Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 15(4): 285–296. Aylward GP (2006) Treating Neurodevelopmental Disabilities. London/New York: Guilford Press. Bager B. (2003) Children of mentally retarded mothers – an inventory. Small group at risk with considerable need of assistance during an insecure childhood. Lakartidningen 100: 22–25. Bager B (2005) Special schools should teach about parenthood. La¨kartidningen 102(11): 885–886. Benedict MI, White RB, Wulff LM, et al. (1990) Reported maltreatment in children with multiple disabilities. Child Abuse and Neglect 14(2): 207–217. Coren E, Hutchfield J, Thomae M, et al. (2010) Parent training support for intellectually disabled parents. Cochrane Database Syst Rev. CD007987. Emerson E (2003) Prevalence of psychiatric disorders in children and adolescents with and without intellectual disability. Journal of Applied Research in Intellectual Disabilities 47: 51–58. Emerson E and Halpin S (2013) Anti-Social behaviour and police contact among 13- to 15-year-old english adolescents with and without mild/moderate intellectual disability. Journal of Applied Research in Intellectual Disabilities 26: 362–369. Emerson E and Hatton C (2007) Poverty, socio-economic position, social capital and the health of children and adolescents with intellectual disabilities in Britain: a replication. Journal of Intellectual Disability Research 51(11): 866–874. Emerson E, Malam S, Davies I, et al. (2005) Adults with learning difficulties in England 2003/4. NHS Health & Social Care Information Centre. Available at: http://www.ic.nhs.uk/pubs/learndiff2004 (accessed 15 February 2010).

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Feldman MA (1994) Parenting education for parents with intellectual disabilities: a review of outcome studies. Research in Developmental Disabilities 15(4): 299–332. Feldman MA and Walton-Allen N (1997) Effects of maternal mental retardation and poverty on intellectual, academic, and behavioral status of school-age children. American Journal of Mental Retardation 101: 352–364. Feldman MA, Varghese J, Ramsay J, et al. (2002) Relationships between social support, stress and mother–child interactions in mothers with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 15(4): 314–323. Gillberg C and Geijer-Karlsson M (1983) Children born to mentally retarded women: a 1-21 year follow-up study of 41 cases. Psychological Medicine 13: 891–894. Ginsberg Y, Hirvikoski T and Lindefors N (2010) Attention Deficit Hyperactivity Disorder (ADHD) among longer-term prison inmates is a prevalent, persistent and disabling disorder. BioMed Central Psychiatry 10: 112. Hindberg B (2003) Barn Till Fo¨ra¨ldrar Med Utvecklingssto¨rning. Stockholm: Gothia. Ho¨glund B, Lindgren P and Larsson M (2012) Newborns of mothers with intellectual disability have a higher risk of perinatal death and being small for gestational age. Acta Obstet Gynecol Scand 91: 1409–1414. IASSID (2008) Parents labelled with intellectual disability: position of the IASSID SIRG on parents and parenting with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 21(4): 296–307. International Association for the Scientific Study of Intellectual Disabilities (IASSID) (2008) International Association for the Scientific Study of Intellectual Disabilities (IASSID) meetings 2009. Journal of Policy and Practice in Intellectual Disabilities 5: 216–216. James H (2004) Promoting effective working with parents with learning disabilities. Child Abuse Review 13: 31–41. Keltner B, Wise L and Taylor G (1999) Mothers with intellectual limitations and their 2-year-old children’s developmental outcomes. Journal of Intellectual Disability Research 24: 45–45. Kessler RC, Adler L, Barkley R, et al. (2006) The prevalence and correlates of adult ADHD in the United States: results from he national comorbidity survey replication. American Journal of Psychiatry 163(4): 716–723. Leonard H, Petterson B, De Klerk N, et al. (2005) Association of sociodemographic characteristics of children with intellectual disability in Western Australia. Social Science and Medicine 60(7): 1499–1513. Lindblad I, Billstedt E, Gillberg C, et al. (2013) An interview study of young adults born to mothers with mild intellectual disability (under revision). Journal of Intellectual Disability 17(4): 329–338. Lindblad I, Gillberg C and Fernell E (2011) ADHD and other associated developmental problems in children with mild mental retardation. The use of the ‘‘Five-To-Fifteen’’ questionnaire in a population-based sample. Research In Developmental Disabilities 32: 2805–2809. Lindsey M (2002) Comprehensive health care services for people with learning disabilities. Advances in Psychiatric Treatment 8(2): 138–147. Llewellyn G and McConnell D (2002) Mothers with learning difficulties and their support networks. Journal of Intellectual Disability Research 46(1): 17–34. Llewellyn G, McConnell D and Ferronato L (2003) Prevalence and outcomes for parents with disabilities and their children in an Australian court sample. Child Abuse & Neglect 27: 235–251. Morch WT, Skar J and Andersgard AB (1997) Mentally retarded persons as parents: prevalence and the situation of their children. Scandinavian Journal of Psychology 38: 343–348. Murphy N (2011) Maltreatment of children with disabilities: the breaking point. Journal of Child Neurology 26(8): 1054–1056. Rasmussen P and Gillberg C (2000) Natural outcome of ADHD with developmental coordination disorder at age 22 years: a controlled, longitudinal, community-based study. Journal of the American Academy of Child & Adolescent Psychiatry 39(11): 1424–1431. Rodriguez A, Ginsberg Y, Fernholm A, et al. (2007) ADHD difficult to diagnose in adults. ASRS v1.1 self-report scales valuable help–now translated to Swedish. La¨kartidning 104(18): 1398–1400.

Lindblad et al.

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Rose E, Bramham J, Young S, et al. (2009) Neuropsychological characteristics of adults with comorbid ADHD and borderline/mild intellectual disability. Research in Developmental Disabilities 30: 496–502. Simonoff E, Pickles A, Wood N, et al. (2007) ADHD symptoms in children with mild intellectual disability. Journal of the American Academy of Child & Adolescent Psychiatry 46: 591–600. Stormark KM, Heiervang E, Heimann M, et al. (2008) Predicting nonresponse bias from teacher ratings of mental health problems in primary school children. Journal of Abnormal Child Psychology 36: 411–419. Strømme P and Magnus P (2000) Correlations between socioeconomic status, IQ and aetiology in mental retardation: a population-based study of Norwegian children. Social Psychiatry and Psychiatric Epidemiology 35(1): 12–18. Tarleton B, Ward L and Howarth J (2006) Finding the Right Support: A Review of Issues and Positive Practice in Supporting Parents with Learning Difficulties and Their Children. London: The Baring Foundation. Tymchuk AJ (1992) Predicting adequacy of parenting by people with mental retardation. Child Abuse & Neglect 16(2): 165–178. Tymchuk AJ (1994) Depression symptomatology in mothers with mild intellectual disability: an exploratory study. Australia and New Zealand Journal of Developmental Disabilities 19(2): 111–119. Tymchuk AJ and Feldman MA (1991) Parents with mental retardation and their children: review of research relevant to professional practice. Canadian Psychology/Psychologie canadienne 32(3): 486–496. Wade C, Llewellyn G and Matthews J (2008) Review of parent training interventions for parents with intellectual disability. Journal of Applied Research in Intellectual Disabilities 21(4): 351–366. Weiber I, Berglund J, Tengland PA, et al. (2011) Children born to women with intellectual disabilities - 5-year incidence in a Swedish county. Journal of Intellectual Disability Research 55: 1078–1085. Willems DL, de Vries JN, Isarin J, et al. (2007) Parenting by persons with intellectual disability: an explorative study in the Netherlands. Journal of Intellectual Disability Research 51: 537–544.

A register study of life events in young adults born to mothers with mild intellectual disability.

Young adults, born to population-representative mothers with intellectual disability (ID), were targeted for psychosocial/life event follow-up...
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