Diagnosis of Autism Spectrum Disorder. A good thing?
September 2, 2014 9:00 PM   Subscribe

My daughter just turned 10 and she has traits that may well indicate that she is somewhere at the high-functioning end of the autism spectrum. Should I get a formal diagnosis?

A lot of people in her family tree are nerdy/bookish/socially awkward/unco/socially anxious/generalised anxiety, so I've kind of attributed most of her behaviour to those attributes, but now she's getting older some the traits seem to gel together into what seems like it might actually be the-syndrome-previously-known-as-Aspergers, and/or pragmatic speech delay.

I'm trying to decide whether I should just move forward on the assumption that is the case, and learn about strategies to deal with her particularly awkward behaviours, or go through the formal process of assessment. My daughter will be Much Affronted and cross if I try to go ahead with it, but that shouldn't be a reason to not do it, I guess. I'm in New Zealand, if that helps, and have spoken to my GP who gave me a phone number for a pediatric Occupational therapist who does assessments.

What do you think?
posted by slightlybewildered to Health & Fitness (17 answers total) 1 user marked this as a favorite
A lot depends on what support is available at school. Here in the US, depending on the school district, the Individualized Education Plan that comes along with the formal diagnosis can be the only hope of having the rigid conformity of the school system altered to the point where learning is enjoyable. For example, a child of my acquaintance has an autism diagnosis, and now he's allowed to wear noise-dampening headphones during tests so the environmental noises during exams don't drive him to distraction. If that's not the case for your daughter's school, than the reasoning behind the diagnosis may be less compelling.
posted by KathrynT at 9:21 PM on September 2, 2014 [5 favorites]

I don't know how it is in New Zealand, but in America, the diagnosis is the magic key that opens the door to additional services. For my kid, the Oppositional Defiant diagnosis was the golden ticket for all the extra services from the public schools.
posted by colin_l at 9:24 PM on September 2, 2014 [2 favorites]

As someone who was assessed at about that age, I'd say yes, absolutely.

I don't know how the school system there works, but having a formal Autism diagnosis in the US school system is like a magic pass for academic accommodations. It had no negative repercussions in that sphere, and helped immensely if I hit an Anxiety Brick Wall. Without a formal diagnosis, the school would have had basically no obligation to provide accommodations. It wasn't a magic cure-all but I knew it was there if stuff went spiralling out of control.

On a personal level, it was nice to have a name to tag parts of my personality with, and to gain some self-insight. There is a lot of good reading material out there- including some targeted at her exact age group- about, by, and for people living with Asperger's syndrome. Being able to read a memoir and say Oh they're like me, and it's not a terrible thing! can be pretty amazing.

If she is on the spectrum, then after a diagnosis both you and any mental professionals who you take her to see will have a clearer idea of what might help her as she grows up. The earlier someone is diagnosed (generally speaking), the easier it is for them to gain the cognitive skills that will help them navigate the neurotypical human world.
posted by BungaDunga at 9:37 PM on September 2, 2014 [1 favorite]

Can't speak to NZ, but i was assessed and diagnosed in the US.

It helps a lot in public school, but i had to drop out of private school following the assessment(and a previous false-start of an ADHD diagnosis) because they weren't required to do that and actually wanted to treat me like shit because of it.

If it's public school and there's a system in place for assistance if you have a diagnosis i'd say it could be beneficial. If it's a private school and there isn't... well, talk to other parents if you can and see what their experiences were.

I will say i agree with the idea that it's a good thing to just know, for herself, so that she can go "ok, so this is what this is" about the specific behaviors and thought processes that make her feel different though...
posted by emptythought at 10:12 PM on September 2, 2014

Yes, worth it... There is extra support available in Australia too. My husband is a social worker of sorts who helps high functioning kids with a diagnosis (many autistic) transition successfully from high school to work/college. Memail me if you have questions or want to know more!
posted by jrobin276 at 11:08 PM on September 2, 2014 [1 favorite]

My daughter will be Much Affronted and cross if I try to go ahead with it, but that shouldn't be a reason to not do it, I guess.

Wait, why shouldn't that be a reason to not do it?
posted by rue72 at 11:12 PM on September 2, 2014 [3 favorites]

Because she's 10? And parents need to put their kids' total welfare ahead of the kids' immediate wishes, aka why you can't eat ice cream for every meal.

I would suggest pre-watching some documentaries about people with autism and choosing the most hopeful ones that are positive about neurodiversity to watch with her. Start by de-stigmatising autism at home and providing a range of autistic examples for her to relate to. Temple Gradin is the usual person to start with here. (YMMV, but watching an interview with her and reading some of what she wrote has helped me handle conversations better with some friends who are on the high-functioning side.)
posted by viggorlijah at 12:13 AM on September 3, 2014 [5 favorites]

She'll be cross with you?!? Look, she's ten years old: you're the parent, she's the kid. Getting her diagnosed sooner rather than later means that if she is on the autism spectrum, she can get help that much sooner too.

(And as a nerdy/bookish/socially awkward person myself, I'm pretty certain that combo doesn't guarantee she is on the spectrum: she might merely be nerdy, bookish and socially awkward. In the real world, we ain't all perfect extroverts!)
posted by easily confused at 5:17 AM on September 3, 2014 [2 favorites]

A friend of mine has a son and was recently told that he is also on the high functioning end of the autism spectrum. The wait list here in Florida for a formal diagnosis is about a year long, but she's been on the list from day 1.

There are several programs and scholarships tailored towards children on the autism spectrum, but they require an official diagnosis to qualify for any of the benefits. I think, if you research what is available in your area, an official diagnosis may be needed as well.
posted by Sara_NOT_Sarah at 6:05 AM on September 3, 2014

Diagnosing people based on the internets is bad business.

If you think your child needs attention, seek professional help. (If anyone at her school has suggested she needs speech therapy, run to a clinic. Early speech therapy - if she needs it - is a blessing.)
posted by Lesser Shrew at 6:23 AM on September 3, 2014

I was never formally diagnosed, although as an adult, after several years in therapy, my therapist and I have come to the conclusion that I probably am. At this point though, I'm electing to avoid formal testing, because it's pretty much a total pain to get it done when you're an adult. I've also more-or-less developed enough workarounds on my own to get by, especially with the help of my therapist.

That said, I wish my parents had fought to get me some sort of diagnosis when I was in middle school. They dismissed my behavior as immature and foolish, and for about 10 years, I had a pretty crappy time of it because I didn't know what the hell was wrong with me.

The diagnosis helps. It's not an excuse, but it would have provided an explanation, and probably saved me years of having to learn the workarounds I had to figure out for myself. A diagnosis would open up a whole new way to approach things.
posted by PearlRose at 6:31 AM on September 3, 2014 [1 favorite]

I'd say a lot of it would be based on how people treat her (and her behavioral quirks) now, versus how they might treat her if those quirks were "a condition". You, as parents/family, are very accepting of her quirks, and your daughter is less likely to feel as PearlRose describes, so a diagnosis might not be personally important. A lot of public school systems are accommodating of conditions but intolerant of quirks, so a diagnosis would be very helpful. It sounds like maybe you're asking if there's a downside, if there's a segment of the population that would be amusedly tolerant of quirks but wickedly prejudiced against conditions... I don't know, but I don't think so. In any case, she's not required to go around wearing shirts that say "Caution: Autistic", you/she can share that diagnosis with only the people she wants to, in only the situations you/she think it will help.
posted by aimedwander at 6:59 AM on September 3, 2014

Knowing someone who didn't get a diagnosis until they were an adult, who can look back and see all the places where the extra help would have not simply smoothed a few interactions, but drastically and dramatically improved their entire young life, I urge you to get a formal diagnosis.
posted by carrioncomfort at 12:14 PM on September 3, 2014 [1 favorite]

To clarify, I bring up my story because as a kid, I probably would've pitched a fit if I was dragged into testing. It's only in hindsight, as an adult, where I wished my parents had been more proactive.

carrioncomfort nails it.
posted by PearlRose at 12:43 PM on September 3, 2014

I was diagnosed as autistic when I was younger than your daughter, and in retrospect, I wouldn't recommend it unless it's absolutely necessary.

Because I was high functioning, the diagnosis put me in a category I didn't belong in. I had perfect scores on my schoolwork, but I nearly got put in a class for kids with real disabilities just because I was kind of weird and didn't look at the teacher when she was talking. I'd had a few little social issues before the diagnosis, but they only got worse once the school wrote my issues off as a 'disability.' It instantly turned my preferences and strengths and deficits into one big comprehensive pathology, which meant they didn't need to consider that maybe sometimes it was them who were being ridiculous. (Which they were, BTW.)

I think the biggest issue with broad diagnoses like that is that the 'autism spectrum' is HUGE, and it can manifest as anything from some minor personality quirks to a full on disability. On the high functioning end, I think the diagnosis can be very harmful, because it treats a child's normal personality as though it's a disease. The fact is that I didn't really need any special accommodations. I just needed not to be bullied (and I was primarily bullied by teachers), which is something every kid needs.

And I didn't have the dyspraxia, but I have a family member who had it as a result of cerebral palsy, and the extent of his accommodations were that he was allowed to use a typewriter for assignments, and he did extracurricular work on coordination, which consisted almost entirely of practicing motor skills by pouring dried beans into glasses, tying shoelaces, and buttoning. Granted, this was a pretty long time ago, but from what I've seen, it's still treated simply by practicing the things you're not good at, and making a few accommodations so that those minor deficits don't affect progress in other areas.

So IMO, the important things to ask are what your daughter needs help with specifically, how a broad diagnosis would help with that, and what the possible downsides would be. Are there diagnoses available for her specific issues that don't invoke the baggage of all the other symptoms and manifestations that she doesn't have? Does she even need a diagnosis at all to get the help she needs, or can the school treat her as a regular kid who needs a little extra work on a couple of things, the way all regular kids do?

And please do involve her in the decision process. Ten year olds are kids, but they're pretty big kids, and they're individuals. Only you guys know what her maturity levels are, but a lot of ten year olds are pretty capable of understanding long term consequences and thinking through choices like this.
posted by ernielundquist at 2:30 PM on September 3, 2014 [3 favorites]

I just came back to say that I am also kinda awkward and nerdy, and aside from my husband's job we have a cousin and a niece who are both autistic and very high functioning... So mostly they're awkward and nerdy too. The thing is though, that their awkward nerdiness comes from a very different place than mine and requires different solutions and coping mechanisms. Things have changed a LOT, and I think she will have a much better time in HS if she is developing effective coping mechanisms *now*... Regardless of the diagnostic outcome, it will point you in the right direction *for her*.
posted by jrobin276 at 2:47 PM on September 3, 2014

I'm a social worker in the USA who works with children with various mental health diagnoses. As much as I hate sticking labels on young children, if I sense that a child may be on the autism spectrum, I'll diagnose that in a heartbeat. At least here, having that official diagnosis opens so many doors in terms of getting speech, physical, and occupational therapies; getting assistance at school; getting long-term mental health services paid for by the government so that parents don't have to pay out of pocket for family therapy, for door alarms for children that wander, etc. Hoping for all the best for your family.
posted by epj at 5:18 PM on September 3, 2014

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