Deciding on whether or not to have your child officially diagnosed with something is a bit of a controversial topic. I guess every parent is different and will do what they feel is best in their circumstances. DP and I have chosen to go down the road of having our son 'labelled' or diagnosed with a known disorder/syndrome. Some of my reasoning in choosing to do so has come from the work that I do. To be honest, it never really occurred to me NOT to have T1 officially diagnosed. To me, if he had the 'label', this meant that he might identify with some of what he is going through. He could take ownership of it and learn about it. I felt that the same would be true for people who knew and worked with him and our family.
Another factor at play is that having the official label means that T1 has rights with regards to his education. The Additional Support for Learning Act means that he can expect reasonable adjustments in the education setting to take account of his learning and development needs. T1 has been very lucky in that he received support in Nursery and Primary 1 before a diagnosis was made. Not all schools are that supportive pre-diagnosis.
When you recieve an official diagnosis, it confirms that, as you suspected, all is not well with your child. Every fibre of your being wants to run away from that fact but DP and I felt that we owed it to T1 to deal with those feelings to get through the assessment process so that T1 may benefit in the long run. It is a big responsibility as a parent to choose to have your child offically diagnosed and the decision has not gone past without some anxiety. DP and I can only hope that T1 will think that we made the right decision in years to come. Whether or not he chooses to use the label when he is older is his choice, but for now, we use it to get the best care and education we can for him.
But how do you go about getting the best care and education in Scotland? We see the issue about 'diagnosis or not' pretty much as you do and went through with it against the strong current of opinion from some professionals involved - for the same reasons you mention above. But we run into a defensive attitude anywhere we go now with nothing being done for the child that could be called helpful for the past two years since the diagnosis. The only thing that ever triggered any help was an early speech delay - something easily definable (and nobody shyed away from naming that by it's name) - but that support has petered out by now and now there is nada, nothing! He's 10. The argument being is that he's good with the curriculum. Yet we know about so many things that could be done for him alongside the curriculum that would help him become a more happy and independent person later in life ... Sometimes we feel simply desperate about the ignorance we meet everywhere about what could be done. Do you have any good experience to share? I'll look for some in your blog later - just found it today. Best of luck!
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