22 Years Old and Just Diagnosed
My son Charlie was diagnosed with autism when he was two years old: From early on, we had a name for “what” Charlie had. Theo Ballard (a pseudonym) was 22 years old when he was diagnosed with Asperger’s Syndrome after a childhood of “challenging” behavior and “periods of unhappiness with no apparent cause” and, as a young adult after college, a “depressive breakdown” and an initial diagnosis of “double depression” (that is, “chronic mild depression from childhood, and depression of more recent origins”). In Beyond diagnosis in the March 3rd Guardian, Theo’s mother, Rose Ballard (also a pseudonym), writes about his and her mixture of feelings after receiving the diagnosis:
As we walked back to the car through the hospital grounds, a wave of relief swept over me. I had a diagnosis, and for me it felt like I had at last reached the end of a very long journey. I wanted to take Theo to Pizza Hut and buy him a margherita with a cheesy stuffed crust - his favourite treat. But Theo didn’t feel like celebrating. He had a diagnosis, and to him it felt like a life sentence.
Theo’s only being diagnosed as an adult has, Ballard notes, made it even harder for him; “Young adults are not open to learning coping strategies in the way that children are,” she writes. In contrast to an article in last week’s Washington Post that noted how some adults feels a sense of relief on learning that there is a name, a label for why they have been “different” throughout their lives, Ballard’s account in Beyond diagnosis presents how just finding a name for what one “has” is not necessarily a solution, and can indeed only open more questions that do not seem to have answers.
Taken together, his difficulties make him feel that embarking on an independent adult life is a frightening and arduous endeavour.
His diagnosis of AS felt like the end of a search for an explanation, but what happens next? How does the NHS provide help for a condition that has no cure?
…….
So Theo is stuck. After years of struggle and unhappiness we thought we had found some kind of solution. But even with a diagnosis, we still don’t know how to help Theo move forwards, into his life.
The Ballards’ experiences reinforce in me the belief that early diagnosis of autism is not something to be afraid of. While it is not easy for parents to learn that a child has autism, the sooner they find out, the sooner they can learn about how to help a child learn and thrive—and the sooner they can understand that a life with autism can be a very good life, indeed.
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POSTED IN: Adulthood, Asperger's Syndrome, Health, Psychology, Work
12 opinions for 22 Years Old and Just Diagnosed
Judi
Mar 7, 2007 at 2:15 am
My ex-fiance was diagnosed with Aspergers at the age of 35 and the reactions of himself and his mother were very similar to those of Theo and his mother. While his mum felt relief, *D* still has no clue what to do with his diagnosis. As a child in the 70’s his mum took him to physician after physician who promptly told her that there was “nothing wrong” or “if her parenting skills were better *d* wouldn’t be as he was”. I speak with her frequently she always says that I am so very lucky to have a diagnosis (my Andrew was diagnosed at 20 months), that we can do so much for him, and that I won’t be subjected to feeling inadequate as a parent over something I had no control over.
Ms. Clark
Mar 7, 2007 at 3:13 am
If Theo were to read some of the positive thoughts coming from autistics already diagnosed it might be a great help. Also, it takes time to assimilate new information, I would think it would be like learning that you were adopted or maybe if you had been raised as a girl, that you had been born a boy… it’s a very deep thing that causes one to rethink their whole history and dredges up lots of hard feelings.
Still, overall, I think a diagnosis is better than none. Personally, I think early diagnosis is only good if the parents know what to do with the information, otherwise more harm can be done WITH a diagonsis. Especially, since so little can be predicted from the behavior of a two year old, and the trend now seems to be to give the parens a worst case scenario prognosis, pushing the parents toward desperate measures (see: Abubakar Tariq Nadama.) I fear for the child of parents getting the dx at age 2 if they aren’t well supported by neurodiversity type thinking. I fear for childhoods lost to 40 hours a week of high pressure “therapy”, then there are the drugs that some irresponsible people want to prescribe.
Kristina Chew, PhD
Mar 7, 2007 at 3:20 am
Agreed and agreed. I guess what I would like to keep working for is to make it clear to parents whose very young children are diagnosed that autism is not something to be afraid of—that there is a best case scenario prognosis too. I’ve been trying to communicate this to a parent whose son was not even two years old when he was diagnosed.
David N. Andrews M. Ed. (Distinction)
Mar 7, 2007 at 3:30 am
From a professional perspective, a diagnosis is only useful if there is something good to follow on from it. In most cases, the clinicians tend to get it wrong: they focus on ‘rehabilitating’ and fixing deficits. What about a counselling setting in which the diagnosee could meet others with the same diagnosis and discuss their feelings on who they are? This is one thing that is happening here in Finland but is nto part of the ‘official’ services package.
David N. Andrews M. Ed. (Distinction)
Mar 7, 2007 at 3:30 am
nto=>not … I need more tea :/
David N. Andrews M. Ed. (Distinction)
Mar 7, 2007 at 3:33 am
Well, smack me on the bum with a bread roll and call me Betty.
My colleague in California (another spectrumite psychologist!) was thinking roughly the same as I was… nice one MsC… you are absolutely right on the damage that can be done with a diagnosis when no other info on ‘where to go from there’ is available.
Harold L Doherty
Mar 7, 2007 at 8:17 am
Mr. Andrews M. Ed. (Distinction)
You said “From a professional perspective, a diagnosis is only useful if there is something good to follow on from it.”
Are you opposed to the acquisition of knowledge?
Who determines whether something good will come of the knowledge that a person has a neurological disorder?
Do you, from your professional perspective, make that determination for others?
Marcie
Mar 7, 2007 at 9:49 am
I don’t know what things would have been like if I’d had a diagnosis when I was young. But coming from the other side of things, I’ve extremely glad I found out myself and found other people on the spectrum to talk to first, BEFORE every speaking to a psychologist. Actually, I was insulted when a friend said I should get a professional diagnosis; I didn’t want to pay someone I didn’t know, who didn’t know me, to judge whether I was dysfunctional enough to warrant a lable. I know me and I knew the truth of what I’d come across and that was enough. Incidently, I did end up getting an official opinion, for ADA reasons.
Kristina Chew, PhD
Mar 7, 2007 at 10:35 am
In the case of Charlie, getting the diagnosis was the first step in really understanding what he could do, and what he could not, and in considering what to do. Parents are very susceptible to theories and treatments that have no real basis in actually helping a child—a lot of education and caveats needs to be expressed.
Bernie318
Mar 7, 2007 at 12:54 pm
Isn’t it interesting how so many people react differently to diagnoses? Some take it in stride, merely realizing that some scientist has managed to describe them. Some research to help their children cope, and others are devastated, and try to “cure” their children.
Kristina Chew, PhD
Mar 7, 2007 at 1:01 pm
I also think it’s interesting how we in our culture and society today have come to put such a store by them: Are we a culture of diagnoses?
Autism Vox » A Lot of Knowledge Is Not a Bad Thing: Prenatal Testing and Diagnosis
Mar 7, 2007 at 1:42 pm
[…] As I wrote yesterday, I think it is helpful to get a diagnosis of autism as early as possible. Before Charlie was diagnosed with autism, I felt like I was in a state of free-fall, my mind full of questions (”do you think he’ll ever talk? why is tape compartment on the CD player the only thing he plays with? why, as we walked into Office Max, Charlie fell to all fours and hit his head on the linoleum?). Other than averted eyes and hesitant, sympathetic smiles, there were no answers from the doctor, well-meaning relatives and colleagues at work, Charlie’s daycare teachers. No one wanted to be the first to say “autism”—because, as I look back, everyone equated the notion of Charlie being autistic with a worst case scenario—-that an autism diagnosis is a fate worse than death. This kind of alarmist thinking can impel parents into treatments and therapies that make claims for cures and recovery that are misinformative and that, I think, do not encourage a parent enough to think about how, while life with an autistic child may well turn out to be other than one might have expected, this does not mean that it cannot be a good life. An autism diagnosis is not a death sentence. An autism diagnosis is not “the end” to a story, but the preface to a new beginning—to an unexpected childhood, and a journey into places I had never been able to imagine until Charlie was walking with me. […]
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