Thanksgiving & a Dual Diagnosis
This week I celebrated Thanksgiving with my extended family for the first time in 21 years. It was a wonderful occasion and great to celebrate on the day itself. For the last 21 years I have lived in the UK and Ireland and not being a holiday in those countries, I would always celebrate Thanksgiving on the following Saturday. It’s not quite the same but needs must. My family has a tradition of saying a general prayer of thanks followed by each person in turn, sharing what they are thankful for. It’s a great exercise and helps me to be mindful of all the things that make life worthwhile and meaningful, even when outward appearances would say otherwise. One of the things I shared was that my daughter was (FINALLY!) officially diagnosed with autism this summer and for that I am truly thankful. Later in the evening I took an antacid and checked my emails. I am still in the habit of working on Thanksgiving and many people who correspond with me do not celebrate this holiday. I received an email that was very similar to my own situation earlier in the week. It was from a mother who was told by a professional that her child might have autism. Obviously, the mother was upset and frustrated. Just a few days before I had an appointment with a mother who had a young son with Down syndrome who seemed to be developing differently from the typical profile. The mother was concerned that her son might have another condition other than this syndrome and mentioned autism as a possibility. This is a common concern and I have seen a lot of children who have a dual diagnosis. I would like to share a few things I share with parents because it is such an emotion-filled topic. First, a few facts:
- It is well known that there is an overlap between Down syndrome and autism in that there are common traits. Children with Down syndrome who do not have autism will sometimes do things like flap or line things up. They both like to adhere to routines and can have problems with change. These things alone do not diagnose autism. Only a psychologist or psychiatrist is trained to make the diagnosis and only when using approved diagnostic tools. Because of the developmental delays apparent in Down syndrome it is difficult to make any “snap judgments”. The diagnostic criteria in DSM IV must be met.
- Autism seems to be more common in children with Down syndrome than in typically-developing children but professionals argue about how much more common. Thus, although the ‘overlap’ is well noted, we should be taking the possibility of a dual diagnosis more seriously. I believe it is far better to go through a diagnostic screening if there is any doubt and that way parents and professionals know for sure.
- There are some psychologists (I have met a few) who still do not believe that children with Down syndrome can also be autistic. I advise parents to seek a second opinion if they feel a professional is not taking the case seriously. It can also help to talk to another parent with a child with a dual diagnosis. They often know how to navigate the system. There are also chat rooms and group forums for parents of children with this dual diagnosis.
- Autism is difficult to diagnose in the very young. First observable symptoms of autism that we see often include poor communication and sensory problems. I believe that we should treat those difficulties when they present themselves, irregardless of any diagnosis.
- Having a correct diagnosis is very important for people who work with a child. Although no two children are the same, there is a typical profile for a child with Down syndrome and a typical profile for a child with autism. The two are not the same. When there is a dual diagnosis, educators and other professionals need to be focusing on the treatments and interventions that autistic children need.
The impact on parents from the extra diagnosis is often huge, but can also come as a great relief. A diagnosis of Down syndrome usually is followed by a period of grieving and coming to terms. When the autism diagnosis is made, parents are often aware that their child is a bit different but the finality of the extra label can still hit hard. Parents know that the label does not change the child they know and love, but it is something else to come to terms with.
All of these facts make it clear that families need support. They need professionals who see possibilities beyond a single diagnosis of Down syndrome while at the same time, not spreading doom and gloom and jumping to conclusions. Therapists and educators should be sharing any concerns and observations with the intervention team and NOT making a diagnosis of autism to the family. A referral should be made, informally at least. And when, and if, a diagnosis is made, families need advice about where to go. I advise parents to join autism associations to learn more about the condition and to meet other families.
As with any child, there will be good days and rocky days. We all have days when we feel strong and days when we feel defeated. My experience is that the families who cope best are the ones with faith, social supports and a sense of humor. These important ingredients help us to keep perspective and to remain thankful for the blessing of our child.
© Ann Haig, DSC 2008.
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