How important is a diagnosis?
Early or late
I have experience with people around me who either have had a late diagnosis or no diagnosis at all. There are positives from getting one, but also not getting one isn’t always a disaster. A late one can explain things your past and help you with what’s still to come. Although if you get the help you need then a label probably doesn’t matter.
My eldest failed his development test at 18 months old, he ended up in one hospital while his brother was born in an other. He was tested relevant to the areas he failed in. He was late with speech, walking, sitting up with no help, and general behaviour. This started many years of testing and support. When the youngest joined his brother after failing the same tests , it became years of joint testing.
At the time doctors had ideas for the eldest that didn’t work for both of them to be similair. Ideas included calcium on the brain and problems during pregnancy. So rather than a definite diagnosis , we ended up with none for either. They shared doctors for genetics, twisted legs, eldest nose bleed and much more. We got support from services related to education and behaviour problems. School was supportive and they got the help they needed.
After 12 years of testing, referrals and doctors I did plenty of research and decided Autism fitted my eldest. Our doctor referred us to an autism specialist, we went, I told him what I thought and he agreed. The youngest was very similair to his brother but 35 years later he still doesn’t have a named condition. Both remain with the support they needed, only one with a named condition.
With my wife it was very different, it was 29 years before she had a diagnosis. A mixture of poor parenting and school not helping meant she had various struggles for many years and little idea why. I first met her when she was aged 19 and I diagnosed her in minutes, my experience made it easy and I presumed she had been tested. It took her til many years later when she started the diagnosis process. A doctor visit, a questionnaire, statements from family and a face to face interview started it all. Then a panel of experts took the answers and confirmed Autism, soon after her 29th birthday.
It gave her relief but also a degree of anger that nothing had been done earlier. When school had suggested there was something up her parents got angry, rather then supportive. Although I had told her for 10 years she had autism it was a change for her to get the confirmation. She relaxed, stopped masking and has become her real self. The Autistic traits have come out much more since the diagnosis. She has told her work, my side of the family and will try and get help for her first flight abroad.
She freely gets over stimulated, shows her tics and admits what she is struggling with. There is no discussion of medication or professional help yet, but the diagnosis has been a great help. Confirmation after 29 years of school, relationships and work was a relief. She understands why she masked, why she didnt make friends and understood why her life had followed the path it did.
I also had a version of this for myself. From working in a care room I caught covid a few months before the vaccinations were released. I had covid, then long covid and finally something else. The long covid was bad but after a few months it became worse. The constant pain worsened , the breathing was harder, the brain fog worse and the fatigue harder. I had blood test, heart test, xrays and a lot of poking and prodding.
When the doctors couldn’t find anything there is one thing left, Fibromyalgia. Its a condition that hasnt had a precise cause recorded, which means no cure. I have got the help since, many medications and a pain clinic. The diagnosis explained the pain , it could have been worse and in fact there were worse conditions suggested. Its a disability that affects my daily life at every stage, something I will endure for the rest of my life.
Unfortunately the tests have also flagged high blood pressure, high cholesterol and now a high risk of diabetes. The main problem is that different conditions share symptoms and one can affect others. Fibromyalgia affects sleep, this raises the risk of diabetes for example. So I need to have a better diet and to exercise more, even though I thought my diet was fairly good and I am limited in how much I can exercise.
So in summary, seek medical advice if you think you or your children have a condition. Also it isn’t a disaster if nothing is confirmed, treat the condition as if it was confirmed and live the way the condition would dictate.