25th Apr, 2008

Waiting Eleven Years for a Diagnosis

Just a couple of months ago I received the neuropsychologist’s report from the assessment she did on eleven year old Seth late last year.

Six pages into the report which detailed the assorted cognitive areas she tested I read the words I’ve been expecting for years….

Seth’s profile can be most explained by alcohol related neurodevelopmental disorder [ARND]….

Apparently a definitive diagnosis cannot be given without confirmation of maternal substance abuse. Although there is no doubt his mother drank heavily throughout the pregnancy, we don’t have written evidence of this.

But here at last is an explanation for all the difficulties Seth has experienced throughout his school years and hopefully I can now say to teachers and any others who have contact with my son, “this child has fetal alcohol brain damage, this is how it has effected him, and this is what you need to do to ensure he has the best opportunity to learn” (and hope they will listen to me).

When Seth entered our lives barely six weeks old and less than seven pounds, despite being born pretty close to full term, we had no idea of the distress and joy this little boy would bring to our family. It started as a one week voluntary placement by parents both suffering from alcohol dependency who were unable to deal with the constant crying of their baby suffering from alcohol withdrawal. One week turned to two, then Human Services became involved as the parents weren’t attending access visits or responding to the social worker’s calls. Weeks turned to months and Seth saw his family only twice after entering care. They eventually faded out of his life altogether. I have had some written correspondence with his mother. I think she is glad her little boy is in a safe, loving home away from the alcoholism and domestic violence that would otherwise have been his experience.

I was the one to take baby Seth to the Children’s Hospital to test for Fetal Alcohol Syndrome (FAS). The geneticist who performed the examination reported that although he didn’t feel that Seth had the facial appearance consistent with FAS, his small size and the history of alcohol exposure were very suggestive of it. Six months later a pediatrician’s report stated that Seth was

at moderate to high risk of having some difficulties associated with FAS/E [Fetal Alcohol Syndrome/Effects].

By this stage Seth’s early distress and dysregulation had abated and he was now a sweet, happy almost one year old who had a special spot in our family. We applied for Permanent Care so he could remain in our family forever. Whatever the future brought, we would be there for him.

During his infancy and preschool years Seth demonstrated timely development in most areas with a few problems around speech and, later, fine motor control. As we accessed services to help him in these areas I continually questioned the possibility of fetal alcohol effects, but the professionals did not seem to know their stuff too well. Replies were usually like “but he doesn’t have the FAS look” or “He’s bright enough, he has a normal IQ” and at age four and a half he did fall within the average cognitive range when tested with the WPPSI-R (a common preschool IQ test). We continued to attend to individual difficulties as they arose.

Preschool and the early years of primary school went along smoothly enough. Seth was always a little behind his peers in any academic areas, but he was a sweet responsive boy who caused no trouble in school so he didn’t attract attention. I noticed he was harder to engage in reading and word games, number puzzles and suchlike than the older kids had been. But he was an active boy who loved bike riding and climbing and performing handstands and cartwheels along the footpath, so his resistance to anything requiring brain power just seemed part of his personality.

By the time he was eight or nine however, we started to notice some puzzling aspects about Seth. Not only was he not learning to tell the time, he didn’t even seem very aware of the time throughout the day, unsure whether it had been lunchtime yet, or when it was time to come inside at the end of the day. Even the seasons and months of the year seemed to baffle him. Time spent on simple maths facts and times tables while walking to school or driving in the car were repeated day after day, with no sense of him getting it. What is more he was less cooperative about spending time on these activities and sought ways to avoid them. At school his teacher found him reluctant to try new activities, hard to motivate and hard to keep on task.

We organised for an educational assessment to be done when Seth was nine and a half and at the end of third grade. It indicated his IQ was in the low average range and that he had some specific learning difficulties in reading and spelling with poor visual memory and weak processing speed. The report concluded with a number of recommendations and suggested classroom strategies which I was able to take back to the teacher. Over the following school year some individual intervention in phonic based reading was provided at school and at home I put him through a similar phoneme based program called Phono-graphix. We did see a little improvement but by the end of grade four Seth had slipped even further behind his peers in all academic areas.

At this point I was really starting to feel concerned for my little boy, now ten and a half years old. Not just because he was doing poorly academically, but I could see his self esteem falling too, and he was often frustrated and confused in the classroom. Some behaviour problems were also starting to emerge in that Seth was becoming a little defiant at school and would sometimes run off from teachers when they were disciplining him. I had a few discussions with the Principal but felt that the school was not able to meet his needs. But then I wasn’t really sure what his needs were.

As Seth started fifth grade I felt trepidation for the coming year. He seemed unsettled, complained about not being able to do the work, told me he was dumber than the other kids and chose to work at home with me regularly (over the years we had often had the occasional ‘home schooling’ day to give him a bit of a break from the daily grind of school) . After an interview with his teacher, who had taught him the previous two years and was really concerned for how difficult he was finding school and how much he was dragging behind his peers, I made the decision to withdraw him from school for a while to try full time home schooling, and pursue a diagnosis of a Fetal Alcohol Spectrum Disorder (FASD) in the hope of finding some answers to the difficulties he was experiencing.

That was one year ago. Home schooling was not completely successful. Seth changed his mind so many times. He would remember the fun times, break times out in the playground with his friends, socialising in class, friends that helped him with his work and he’d forget how discouraged and frustrated he’d been.

Sometimes he would beg me to let him go back to school. He would nag and nag all day, completely unable to focus on any activity, fall apart in my arms, but I knew returning to the state school was not the answer. Their overworked teachers, large classes of 28 kids and lack of interventionist resources meant they could not meet Seth’s needs. If he let me, I knew we could be successful with home schooling, but he resisted most days. He was difficult to motivate, needed my constant attention to get a task completed, refused to get involved with local home schooling groups and hated all the assessments the paediatrician was putting him through in our attempt to gain a diagnosis.

We were starting to doubt whether this was going to lead us anywhere but we stumbled upon a service that we hoped might give us the answers we were looking for. I’ll talk about this more in my next post.


Eleven years is a long time to have to wait for a diagnosis! I pray that the service you’ve stumbled upon will indeed give you the answers you’re looking for in how to best help Seth.

I look forward to reading your next post.

I cannot understand why Australia seems so backwards about this…. I have a friend who has been going though the same thing but just not as long as Seth

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