When new members ask about diagnosis

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I don't understand what you're saying. Wouldn't I want intervention for ASD when I think my child has this? And wouldn't it be helpful for getting those interventions to have an ASD diagnosis?

I'm in agreement with those who say if someone is worried and their child is struggling, getting an assessment is worthwhile. I think the disagreement may not be about the fundamental issues, it may be how children are diagnosed in the US (where if you can learn to have a conversation you have Aspergers, so speech therapy is often very relevant for children diagnosed with Aspergers) and what Momsparky said about diagnosis of some kind being necessary to get any support.

From my point of view, effectively supporting a child is the best way to keep the child in mainstream. But things may work very differently in the US. It is hard to get services and there has to be a very significant negative impact. Basically the teachers have to want help to teach the child. But although parents are included in the decision making team and get to speak, we do not have a direct say as you're describing in where exactly a set amount of money will be spent. I would think that kind of power has a huge impact on how things work. We can ask in the US, the team tells us what is needed and what they will do though. We have the right to speak and we have the right to decline services, though that makes people angry. We aren't told he cost and aren't permitted to barter more of one thing for another. I'm not saying one way is better, just I think a different system.

Just for future readers, I'd also add that it is possible to get services for a child who isn't diagnosed with an ASD, but it means getting a piecemeal diagnosis. For instance, parents would have to request in writing a separate assessment for each individual concern - an assessment for pragmatics and language use by the speech therapist, an assessment for sensory issues by the OT, an assessment for social skills and anxiety/depression/other maladaptions by the social worker. If the child qualifies as having a disability in any of these assessments, they may be awarded services.

The difference is that an autism spectrum disorder has protections under both the ADA and IDEA, and often other protections at the state level that require schools to offer theraputic resources and accommodations, even if the child is meeting grade-level educational standards. Schools in the US are less apt to refuse to offer services for a child definitively diagnosed with an ASD because parents who sue for services are in a stronger legal position.

I don't think the diagnosis itself is necessarily important, but the physical and social therapies, IMO, can be critical.

(I do think it's possible to ask for the therapies separately without a diagnosis, and if refused, to go back and request an autism assessment and ask for therapies collectively, if a parent wants to wait while all of that happens. In that case, one might consider getting a private assessment and bring advocates with them to the school, to strengthen their position. Sadly, many schools hoard services by capitalizing on parents' credulity, and don't pony up services until parents show they know how the system is supposed to work.)

Is this thread about where to put the line for ASD diagnosis?
On the issue of having friends, if a child communicates fine, functions fine in school, and has friends, then ASD is not likely.

It's more a thread about how we as a community are not qualified to make any diagnoses, IMO.

And, as I said before, my child would have ticked all those boxes, and yet has an ASD. Had we not taken him to (several) specialists, we would never have known. Fortunately, we caught it early enough that therapy was able to help him - but the only presenting symptom we could see was that he had a violent temper.

Many people with an ASD are so gifted at scripting that it's difficult to tell that they are simply responding and not actually communicating (meaning they are following the typical pattern a conversation follows without understanding most of the meaning of the conversation.) My son was one of those children - I was shocked when I was told he needed speech therapy.

Speech therapy made more difference for him and us than any other intervention.

Yes that's exactly what I tried to say earlier but was drowned out ...

Under the new DSMV people on the moderate end of the old Aspergers spectrum who function/cope well in society, academically ok, capable of having a job/live independently are at serious risk of falling out of their original diagnosis altogether. DSMV makes it clear without impairment there seems little need to carry any diagnostic labels. The pool of money for support is already so small and really needs to be channeled to kids on the lower end of the spectrum who stand to make the biggest improvement with regular OT or speech therapy,

I'd rather see what little government money there is spent on kids with "classical" autism in order they are taught essential life/survival skills rather than people on the Aspergers side of the spectrum who just need counselling about social problems that their parents can pay for out of their own pocket.

Honestly it's a no-brainer.

It's a mistake to presume kids with Aspergers just need counseling and kids with autism just need speech therapy and OT. That's simply untrue, at least with how diagnoses are made in the US.

Level of functioning isn't necessarily higher or lower based on the original diagnosis. Obviously some parents can pay for counseling, some can't. Some can pay for speech and OT, some can't.

Systems make complicated decisions where to funnel money. And most of us prefer our own children not get slighted. If we met each other's kids we might prioritize their needs as well. Maybe that's why the people making the decisions seem to get so hardened and unfeeling.

Cyberdad in the US people who can pay sometimes do pay for speech, OT, ABA. And for counseling. They're all very expensive, and few can afford what might be ideal. But there is no private counseling versus public speech and OT issue. They're all available in limited amounts with or without public versus private funding. In Australia is it different? Is counseling private and speech and OT publicly available only? Otherwise it's hard to make sense of what your saying.

Last edited by Waterfalls on 20 Aug 2014, 8:29 am, edited 1 time in total.

There are issues on the extremely high end, also where a kid can navigate school fine, and has issues later getting a job. I do not think a good job is done trying to help kids who may end up in that position later. I don't know if they have done studies about how even to identify people in that category.

I think it would be really great to proactively deal with that because there are a lot of people who are smart and would be good workers if they could navigate employment acquisition and workplace dynamics.

If those kids are not diagnosed then that may not even be on people's radar.

I think we're now talking about an entirely different issue: how resources are allocated to individuals with disabilities.

The problem with assuming that kids on the higher end of the spectrum will "get along fine" is that often they don't. I would agree that much of this could be addressed if we lived in a more tolerant society...but we don't. If my high-functioning child is unable to care for himself as an adult (as many are not,) because of his disability, shouldn't he be considered disabled? Many of the "cured" kids face crippling anxiety and depression as adults

This doesn't negate the need for financial support for the kids on the lower end of the spectrum, and that those supports will need to be more intensive and more expensive.

I think the difference between the two is that it's more likely that lower-functioning kids will grow into adults who need lifelong care, while it's a toss-up for higher-functioning kids. In either case, there are needs that should be met, and I don't think hoarding services for one group or the other benefits anyone. Note that there is a study that shows the outcomes for more mildly impacted individuals is not significantly different than those who are severely impacted (this is before early intervention was common:) http://sfari.org/news-and-opinion/news/ ... -as-adults and that adults with AS are at higher than average risk for suicide: http://www.thelancet.com/journals/lanps ... 2/abstract

We don't have data on the effects of early intervention services on adults, but there are indicators that services do make a significant positive difference in the lives of people with autism.

The system does need to be changed. For instance, in the US, it would be nice if we stopped chasing the "why" of autism, and started to focus on the "how:" ensuring that there are adequate supports before looking for "cures." Political change means parents have to work together; if we divide ourselves into small groups it makes us easy to ignore.

Yes, I believe it causes us harm to create divisions and that being in direct competition for resources is a dangerous thing. It's tempting to try to grab resources. But we don't push smaller kids out of their way to get what we of they want, we don't let them do it, we can't go too far down this path without ultimately doing harm to all of us and all our children.

I'm just speaking about how best to use limited public funding. Children on the lower end of the spectrum stand to make the biggest improvement with early intervention. The intervention is one about keeping these kids out of residential homes or institutions when they get older.

This doesn't mean Aspies don't need support, it's just their needs are not as great. That's what I mean't about the DSMV and the current funding modelto support autism (at least in Australia) being a "no brainer".

What is the purpose of diagnosing a happy kid who has friends, communicates fine, and functions fine in school, do you know?

Yes it's true, what purpose indeed? a few years ago when my daughter had a hearing test, I met a mother in the same clinic who had young two teenage sons around 13 and 14 whom she was seeking an ASD diagnosis for. Both boys were gifted intellectually, top of their class, played sport and had friends. As I spoke to this lady it became apparent her main concern was their fixed interests and occasional strange way of talking and behavior and that they had problems talking to girls. While she was embarrassed about their behavior in public the boys were actually quite happy cheerful children who were succeeding in school? quite bizarre??

I think I see now. Yes it is weird when someone needs something to be wrong. I thought you were talking about people like me. My daughter did well but was very clearly different. They called me into meetings to tell me what was wrong and then explained how they would (fail to) handle the problems. They made fun of me when I started to get private assessments and ignored the documents because she was able to learn math and reading. Until all of a sudden she wasn't going along enough and then they wanted to avoid addressing the real problem even when they started spending money. Well, that was my opinion.

And then at some point, after I learned that my role as a parent allows me to produce documents, answer questions of fact that are asked, and mostly, ask questions if I don't agree with something, I also realized that it's seemingly against the social rules for me to complain much. School staff can complain of course. And the parents of children who aren't considered special needs appear to worry and complain about things their children do or don't do with each other all the time.

That's what really seems bizzare to me. The fact that we try to push everyone into some mythic idea of what's normal and perfect, and the closer they come, the harder they are pushed. And the more complaining their parents seem to do. How weird is it that a parent can complain "my child only has a few good friends, I'm worried" but it's socially inappropriate for me to complain "I worry whether my child will ever make a friend"? How weird is that?

Apparently the social rules are that one must be calm and cheerful about more serious problems, but it's ok to complain about things that are not big problems. Sometimes it gets me down and does make me fel isolated. But it seems to be reality.

Complaining about light topics is viewed differently from complaining about things that are perceived as big problems. The less close to a given person you are, the lighter the conversation is expected to be. Anything sufficiently big, I have to basically keep to myself (well, between my husband and me) but and complain about very minor things like traffic, more freely b/c it s considered part of polite (but not necessarily sparkling) conversation.

People really don't know how to react to heavier matters and it becomes awkward.

I am really bad at applying social rules like this, even when I sort of know them, so I just opt to keep quiet about things when in doubt.

Is this even an issue, though? Are doctors diagnosing NT children with ASD?
Also, if this description is what some people think Asperger's is, let me assure you it is not. Children with Asperger's need more than counseling for social issues. Everyone here understands the criteria for diagnosing ASD, right? Social skills problems are only one component of that, even for those with Asperger's.

However, if you took a look at the study I linked, you'd see that without intervention, higher functioning kids wind up in residential homes as adults as well. At best, it's unclear whether you can make this distinction between needs. The solution is a coordinated effort to lobby to provide supports to all children who need them, not to choose one group over another.



The point I was trying to make in the initial part of the thread is that there is no way to know why a parent has taken the time to find WP, register, log in and post a question, but implying that their child is NT because of how they describe them doesn't account for everything that's left unsaid. When it comes right down to it, if there are concerns about autism, the only person able to make a definitive diagnosis is a skilled professional who can do screening and assessment.

An assessment is not a diagnosis. YippySkippy is right, I doubt that doctors are diagnosing NT children with ASD. (and I also agree, social skills are only one criterion.)