Parents with Neurodevelopmental Conditions including Autism Spectrum Disorders

Neurodevelopmental or neurodiverse conditions affect how the brain functions. They can range from minor difficulties to people who need lifelong support. It can be a genetic condition or a condition that has occurred in the womb.

The most common forms of neurodevelopmental disorders are Autism Spectrum Disorders, Attention Deficit Hyperactivity Disorders and Foetal Alcohol Syndrome. There is considerable diversity of needs and abilities in this group of parents.

For further information about definitions and presentations, please refer to the College of Policing Neuro Diversity Glossary of Terms.

Parents who have neurodevelopmental disorders may be able to successfully support their children without any support or intervention from services but some may need additional support to do so.

Parents may experience professional bias and is important that trust and understanding is built up between the parent/s and practitioner so the best outcome is achieved for the child/ren.

These parents may not have a diagnosis. For example, research has shown that women are less likely to be diagnosed with autism as their presentation can differ from the traditional signs of autism. There is a growing trend of parents who are now being diagnosed after their children’s diagnosis.

As with any assessment in Children’s Social Care, it should look at identifying the parents strengths and weaknesses in terms of parenting as well as identifying and involving both formal and informal support networks. This should also include any diagnosis or presentation previously and currently experienced. Every parent has unique and differing needs so the assessment should focus on the strengths and challenges of that particular family.

The risks to the adult from abuse or neglect as a result of their neurodiversity should also be considered in such an assessment and whether they may have care and support needs which can be established by an assessment from adult social care.

Some parents may not meet the eligibility criteria for support from adult social care, however the Care Act places a duty that parents who need assistance with caring responsibilities for their child/ren are eligible if they are unable to fulfil these responsibilities without assistance. 

A multi-agency approach is therefore essential when supporting parents who have neurodevelopmental needs to make sure cognitive needs are identified and addressed. This could include: assessments by psychology, speech and language assessments and occupational therapy to assess what additional support they may need.

Parents with developmental needs may need support to develop the understanding, resources, skills and experience to meet the needs of their children. This will be particularly necessary if they are experiencing additional difficulties such as domestic violence and abuse, poor physical or mental health, living with a disabled child (although they may have more understanding and empathy), substance misuse, social isolation/discrimination, poor housing or poverty.

Neglect through acts of omission is a frequently stated concern. Ultimately it is the quality of care experienced by the child which determines whether the parenting capacity can be regarded as good enough and whether or not a referral should be made for an assessment by Children's Social Care.

Similarly, people with developmental needs may be considered Adults at Risk and targets for those who wish to gain access to children for the purpose of sexually abusing them.

Children may end up taking increasing responsibility for caring for themselves and, at times, for their siblings, parents and other family members. A referral to the local Young Carers Support Group may be appropriate.

Neurodevelopmental issues are lifelong, and parents may need long-term ongoing support, which may need to change to meet the developmental needs of a child as they grow. Assessments must therefore consider the implications for the child as they develop throughout childhood and services will need to re-evaluate the child's circumstances and clear plans should be in place on how this will be achieved.

• Does the child take on roles and responsibilities within the home that are inappropriate for the child’s age?
• Does the parent/carer neglect their own and their child's physical and emotional needs, for example, due to anxiety, never finishing anything, obsessions, collecting items, inflexible rules where things are kept?
• Are good routines in place within the house such as mealtimes, bedtimes etc?
• Are there any issues with food which need to be addressed, for example, does the parent have any sensory issues around food which are impacting on the child’s diet such as Avoidant/Restrictive Food Intake Disorder (ARFID). Is this being transferred to the child. For further information, please see What is Avoidant/Restrictive Food Intake Disorder?
• Are there any issues around play and imagination that need to be addressed, for example, limitation of toys due to sensory/noise issues, obsessive with tidiness so the child has little to entertain themselves;
• How is safety managed for the child? Is the parent’s hypervigilant and risk-averse behaviour impacting on the child? Or does the parent seem unaware of safety risks?
• Does the parent/carer have any other issues which need to be addressed, such as mental health issues, hoarding behaviours, substance misuse, difficult childhood experiences etc?
• Does the parent/carer's neurodevelopmental condition have any implications for the child with schooling, attending health appointments etc. such as avoiding appointments?
• Does the parent seem hyper-focused around issues such as the child’s health, (sometimes fabricated illness can be a worry as the parent’s anxiety/obsessiveness can be misdiagnosed);
• Does the parent/carer's neurodevelopment result in them rejecting or being emotionally unavailable/distant to the child?
• Does the wider family understand and accept the neurodevelopmental diagnosis/issues of the parent/carer, and the impact of this on the parent/carer's ability to meet the child's needs?
• Is the wider family/friendship group able and willing to support the parent/carer so that the child's needs are met?
• Does culture, ethnicity, religion or any other factor relating to the family have implications on their understanding of the neurodevelopmental condition and the potential impact on the child?
• How the family functions, including conflict, potential family break up, parental meltdowns or burn outs, domestic abuse issues etc.
• Is the parent/carer at risk of being exploited by other people e.g. financially, providing accommodation?
• Does the parent/carer have difficulty developing and sustaining relationships or have relationships that may present a risk to the child?
• Does the parent have a limited understanding of the child's needs and development including in terms of pregnancy, childbirth, and caring for an infant?

Where a parent appears not to be able to meet the needs of their child a referral should be made to Children's Social Care in line with the Safeguarding Referrals Procedure.

Children's Social Care will undertake a multi-disciplinary assessment using the Assessment Framework triangle, and include input from Adult Services and other relevant agencies in a timely way.

Specialist assessments are essential as a means to determine whether or not the parent/s requires additional support to enable them to care for the child or whether the parent/s’ condition will, or is likely to, impair the health or development of the child.

Where a parent does have care and support needs and is experiencing or at risk of abuse or neglect; and as a result of those needs cannot protect themselves from the abuse or neglect, an adult safeguarding concern should be submitted.

All agencies must recognise that their primary concern is to ensure the promotion of the child's welfare, including their protection.

It is important that services understand who is to take the lead on assessments:

• Where there are no welfare concerns but adults need assistance with routine tasks of looking after children, Adult Social Care should take the lead on assessment and care planning;
• Where parents need support in the medium to long term Adult Social Care and Children's Social Care will jointly co-ordinate assessment and care planning;
• Where intervention is required to prevent children suffering impairment to their health or development or significant harm, Children's Social Care will lead the assessment and planning with specialised input from Adult Social Care/Health Services.

It is important for support needs to be recognised at the earliest opportunity. If possible, identification of needs should start when a pregnancy is confirmed.

It is particularly important to avoid the situation where poor standards of parental care, which do not, however, meet the threshold of significant harm to a child, subsequently deteriorate because of a lack of support provided to the parent. It is vital to recognise low levels of need, which, if unaddressed, are likely to lead to difficulties for parents and undermine children's welfare.

Where Section 47 enquiries conclude that there is no actual or likely significant harm it will be important that action is taken to prevent future problems arising.

There is very little research in this area of practice and many parents/carers will be able to function successfully without any support. These parents may understand their children with extra needs more successfully because they understand the pressures/issues that their child may experience. For example, they may be happy for their child to play alone, do not put pressure on their child to socialise, understand when they need space, cope with hyperactivity. Shared hobbies can also be a great source of connection between the parent and child.

However, when all the family have needs, it can be challenging navigating everyone’s complex, often opposed, needs. The children’s views and needs will need to be forefront.

The following areas may need to be addressed in any assessment:

• Diagnosis;
• Social networks;
• Social and communication challenges;
• Sensory overload;
• Routine.

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The UK ADHD Partnership