For Families and Carers : Dual Diagnosis ASC/DS

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In the past many professionals considered a dual diagnosis of Autism Spectrum Condition (ASC) and Down’s syndrome (DS) to be uncommon if not impossible.  One of the reasons for this may have been the persistent stereotype of people with DS as friendly, affectionate with outgoing personalities.

We now know that the two conditions can and do co-exist. There is a growing body of evidence (DiGuiseppi et al., 2010; Lowenthal et al., 2007; Moss et al., 2013; Warner et al., 2014) that suggests that a significant minority of people with Down’s syndrome may have dual diagnosis and that this group of people may not fit with traditional ideas about some of the common characteristics of people with just ASC or just DS.  People with ASC/DS may have a specific profile which is perhaps why parents sometimes find it difficult to get a diagnosis for their child. Parents have told us that professionals have sometimes dismissed their worries about dual diagnosis on the grounds that their child does not have a certain trait typically found in people with just ASC.

Case studies and Journal articles

We are always looking for case studies about people’s lives to use in our work. Parents tell us they want to hear more positive life stories about teenagers and adults with dual diagnosis ASC/DS and/or complex needs. If any of you would like to contribute case studies or write an article for the Journal, please get in touch using email: info@downs-syndrome.org.uk

Research Opportunity

Click here if you are interested in being involved in a new research study exploring what it is like to be a parent or carer of a child who receives the secondary diagnosis of Autism Spectrum Disorder.

Why do I need another label for my child?

A parent’s view ‘I felt the diagnosis helped my understanding of my son’s behaviour and it was a relief and revelation too at age 13. The spectrum is so broad that there is no “typical fit” but I did know that my son didn’t seem to fit in with other DS groups we accessed. Looking back I would have changed my approach on some fronts (although hindsight is a wonderful thing regardless of diagnosis). In my experience it has helped us to access services and support.’

Here are some reasons why getting a diagnosis of ASC/DS for your child might be a positive thing to do:

It will help professionals, family and friends to get a better understanding of your child and why they behave as they do

It may help you and your child to access more appropriate support (e.g. from school and social care)

It may change the strategies you and those around your child use to support them

It may help you to perhaps see things with new eyes and to begin to look at whether the environment around your child needs to be changed to meet their needs.

What to do If you think that your child may have dual diagnosis ASC/DS

As a parent, follow your instincts, you are the one who knows your child best. You may have felt for some time that, although each child is an individual, your child was not like other children with Down’s syndrome you know.

It is important to start thinking why you believe your child may have dual diagnosis ASC/DS. These are some things to start to think about.

Gather your evidence

Talk to other people in your child’s life about your concerns (e.g. family, speech and language therapist, teacher or SENCO); it may be that other people are thinking along the same lines as you

List the behaviours you believe indicate that your child has dual diagnosis (keeping a diary over a period of time can be useful as evidence)

Join our ASC/DS Email Group and get the benefit of advice from other parents who have been in your position

Gather up to date information about ASC/DS (DiGuiseppi et al., 2010; Lowenthal et al., 2007; Moss et al., 2013; Warner et al., 2014)

The next step is to show your evidence to your child’s GP, health visitor or paediatrician.

Remember you are the expert on your child; you should expect to have your concerns and observations taken seriously.

If the professional with, whom you raise your concerns, agrees with you, they should may make a referral for a formal assessment. Some paediatrician’s may feel that they have the relevant experience to look at the evidence, assess a child and make a diagnosis. In this case, no further referrals are necessary.

However, if a referral is made, it may be a referral for a multidisciplinary assessment with a group of professionals or it might be for an assessment with an individual professional such as a Clinical Psychologist. Some families may find that they are referred to the local Child & Adolescent Mental Health Service (CAMHS) for the assessment.

If there is uncertainty about the necessity for making a referral or about making a diagnosis, you have the right to ask for a second opinion

If you know of a professional who has experience of diagnosing ASC in children with DS, you can ask for a referral to that professional.

My child has got a diagnosis, what next?

Education

Talk to your child’s school to make them aware of the new ASC/DS diagnosis.  There may be additional services available (e.g. an Autism Outreach Service) to support your child.  At your child’s next annual review ask for the diagnosis to be written into their statement. If you feel that, as a result of the new diagnosis, there need to be immediate and significant changes to the level of support your child receives, you can ask for an interim review of their statement.

If you need specific advice about changing a statement or about the new Education, Health and Care Plans (EHCPs), please give us a call on Tel: 0333 1212 300 (Tue and Thurs 1000 to 1300) and ask to speak to our Education Information Officer.

Click here for information about SEN and the law

Forum

If you are a family member of a child or adult with Down’s syndrome who has complex needs and/or a diagnosis of autism spectrum condition (ASC), we invite you to subscribe to our new Forum, DSA Discuss – Complex Needs & Autism.

Social Care and Local Support

The National Autistic Society has an online Autism Services Directory that covers the whole of the UK

You may want to think about asking Social Services for an assessment or re-assessment of your child. You can also ask Social Services for a separate assessment of your needs as a carer. We have produced some factsheets about getting Social Care Support. Please call us on Tel: 0333 1212 300 if you have any questions about Social Care.

 

DSA ASC/DS Meetings

The DSA organise meetings for families who have an interest in ASC/DS. We try to invite a guest speaker with insight and practical experience of ASC/DS to each meeting. Families find the meetings a good opportunity to form support networks and for the sharing of ideas and experiences.

Find out more on the ASC/DS Meetings page.

Useful Links and Resources

Resources

When Down Syndrome and Autism Intersect – A Guide to DS-ASD for Parents and Professionals by Margaret Froehlke and Robin Zaborek (Woodbine House, 2013). This is the first book to focus on the unique profile and challenges of dual diagnosis. Available from online book sellers.

Early Support Booklet – Information about autism spectrum disorders

Links

Challenging Behaviour Foundation

National Autistic Society

ASC/DS Latest News

Down’s Syndrome & Autism Spectrum Condition Meeting
17 May 2017, Sheffield. Please see full details here

DSA Journal articles available to download

5 April 2017

Three more articles are now available to download:

  • DSA Journal 133 Being Ethan’s Mum
  • DSA Journal 134 Dylan’s Story
  • DSA Journal 135 Dual Diagnosis, Autism Spectrum Condition, Down’s Syndrome and complex needs

Download here

Think Autism Strategy 2015

7 April 2015

New guidance for local authorities and NHS organisations follows public consultation.

The statutory guidance updates original guidance issued under the Autism Act 2009 and the subsequent adult autism strategy. It accounts for progress and updates to the strategy made since 2010, and recent legislation like the Care Act 2014 and the Children and Families Act 2014.

The guidance sets out requirements for local authorities and NHS organisations. It reminds them to work together and with partners, for example, in the criminal justice system or helping people with autism into employment. It provides clarity about what they have to do to meet the needs of adults with autism, including preventative support and safeguarding.

The National Autistic Society has produced a useful overview of the Autism Strategy

Research News

30 January 2015

EU-AIMS Longitudinal European Autism Project (LEAP).

EU-AIMS is the largest single project focused on autism in the world.

The project aims to identify risk factors that contribute to differences in brain development, difficulties in social behaviour and other core symptoms of autism spectrum disorders (ASD). Despite a lot of progress in autism research there is still need more effective treatments and interventions for ASD. A major challenge in developing new treatments lies in the fact that the spectrum is very broad: some people with ASD are highly intelligent, others have a learning disability, some have medical conditions, while others do not. It is therefore likely that a particular treatment may only be effective for some people with ASD or may only work at certain ages. Therefore, the project aims to study a very large group of people with and without ASD from 12 years to 30 years with a wide range of abilities.  Find out more about the project here

Sharing experiences and stories

Have you seen our closed Facebook group?  The DSA Complex Needs and Autism Group is a private space for parents, family members and carers of children or adults with complex needs or with a dual diagnosis of Down’s syndrome and autism spectrum condition. 

If you have a child with a diagnosis of Down’s syndrome and Autism spectrum condition and would like to share your story or experiences with a wider audience, we’d love to hear from you and/or your son our daughter to be featured in The Journal or Down2Earth Magazine or on the website.

We really want you to contribute your suggestions and experiences. If you have ideas for, or want to write a piece for us, please email  stuart.mills@downs-syndrome.org.uk

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