Should I go for a diagnosis of asd?

[soapboxqueen]

Hi everyone. Just looking for some other perspectives.

My ds is 5 and has asd no formal dx though. We are negotiating his statement currently and he has the involvement of speech and language, language communication, ed psychologist and occupational therapy.

Until this point we have avoided camhs for a few reasons. Mainly because i want people (mainly teachers etc ) to look at his needs rather than the label. Too many people think they'know ' what autism is and act according to their personal beliefs etc. The other reason being the limitations it puts on him such as not being able to apply for certain jobs or not being able apply for visas etc in Other countries.

However, after talking with some friends with children with asd who are older, I'm feeling that a dX may have some benefits. Some of them have reported that their children are much less symptomatic and so are faced with teachers etc not really believing there is a problem because it isn't so obvious anymore. Therefore general support and understanding is lacking. If they didn't have the dx they would find things much harder to address.

I've made an appointment with the gp for tomorrow but I'm really torn.

We know he has asd. We know a dx won't change him etc. The issues are about future issues because of that dx. I appreciate that my worries are pretty specific and narrow but some jobs do automatically bar applicants with asd as do some counties bar residency due to asd. No thought given to how severe the asd is, just there is a dx so no go.

If I don't get a dx and just 'manage' his way through school without it I will save him having to face those issues.

"The other reason being the limitations it puts on him such as not being able to apply for certain jobs or not being able apply for visas etc in Other countries. "

In our case there wouldn't have been much chance of reaching the point of being able to apply for jobs or move abroad without having had the diagnosis in place.

For me it would have been like treating individual symptoms but without finding out what their underlying cause was.

The army and police just off the top of my head have a bit in their medical section for new applications which says that those with a dx of autism are not suitable.

Also counties can and do refuse visas based on the increased strain on the public purse. I found news stories from Canada and Australia.

My ds is quite high functioning so in the future he may be less symptomatic. He still may not be suitable for these jobs but I would hate to think that me getting a dx meant that he was dismissed out of hand rather than assessed on his abilities.

I know less symptomatic doesn't mean he doesn't have asd anymore. It's just be may get opportunities based on what he can do rather than what Other people think asd is iyswim

Looking on adult asd websites is a good idea??

Well if he had autism even without a 'label' he wouldn't be suitable for the job then

At the risk of sounding alarmist, I would be wary of setting too much store on how high-functioning he is.

At 5yrs old my ds would have been described as very high functioning. He was bright, popular and most people who didn't know him very well would have been surprised to hear he had a dx of AS.

At 8yrs old it all went very wrong and things went downhill fast. His diagnosis meant that he was able to access the help he needed very quickly. I dread to think what would have happened without that back-up.

In the interest of balance though, my other ds was much more affected at 5yrs old but things have improved as he's got older.

His needs are complex and severe, a diagnosis won't change that. A statement is a statement of need not dx and it isn't affecting his access to services.

We know he has asd because we have specialists within the family which has been of immeasurable help so far.

I've actually just texted a friend with asd for their opinion. Don't know why I didn't think of that earlier

I'm asking for opinions and other people's experiences . Dx is something I've avoided so far but I'm not against it. I just haven't decided if it is right for my son.

Everything has its pros and cons.

Tbh your fortunate in some ways to be able to make the choice about pursuing diagnosis , i appreciTe your son is complex to have a statement , but with dd I don't think we could have avoided getting her diagnosed

Have you looked at all the other reasons you cannot join the armed forces? Severe acne, peanut allergy or coeliac's.
I do think the military need to rethink their blanket ban, as a number of serving personnel definitely do and always have shown traits, maybe they need a campaign.

As to visas, as more high functioning individuals are diagnosed the pressure will become overwhelming for Canada and Australia among others to conform to the UN treaty on disability. However at present as I understand it if you can prove your child is not going to be a drain on health care you can still get a visa.

A diagnosis has been very useful in my family.

Having just looked further for the case of Canada. It only affects if you go there to live or work or maybe study.
You can also appeal any rejection. Basically from there material, if your son does not need excessive medical or social help they should allow the visa regardless of any diagnosis.
If your son needs a lot of medical help, attends a special school, gets social care; then regardless of whether he is diagnosed if you/he wanted to go there then you could have problems (although marrying a Canadian seems to be a way around this).

So the diagnosis isn't the key aspect. If your son needs the help - this could have future consequences.

We find it easier and people are more ready to co-operate to say ds1 has AS and this means you need to x,y,z rather than just please do x,y,z. The "xyz" is undoubtedly going to be different between your son and mine (it's different even between my twins) but saying the diagnosis does mean usually some attention is paid to what you say rather than being dismissed as an over-anxious parent.

The statement will hopefully support him well at school but what about outside activities or interactions with other children and their parents. How are you going to explain his needs to them. What if he does not cope in mainstream even with support - would he end up in an EBD school rather than an ASD specific school. This sounds a bit negative but I am coming from the background of having kids with only minor difficulties until they hit year 4 and who are now in specialist schools.

You could delay getting the diagnosis but bear in mind CAMHS works extremely slowly so it could well take over a year if you do decide to go through it.

I would be very wary of not getting a diagnosis.
When DS was 4 i was told by 'professionals' that although he has ASD he is very bright, would probably be high functioning and manage ok through ms school and get much better as he gets older. They said he would probably live a normal life as an adult.

5 years on he has had full time 1:1 his whole school life with some periods of 2:1 support. He is 1-2 years behind academically because he refuses to do the work and will be starting at an indie ss in September. If we hadn't got the diagnosis then he would not have got the high levels of support that he has. He also wouldn't have got a place at his new school as every child has to have a diagnosis of ASD to get a place.
The 'professionals' are now saying that although DS is bright, he will probably need residential care in his teens and supported living as an adult.

Nobody knows what will happen for any child in the future so don't rely on any professionals telling you everything will be fine when it really might not be.

Fair game that is a very good point , you need a autism diagnosis for dd2 s school

Once we received the diagnosis it was much easier to get support in place. Our son's school also only take people with a diagnosis. What happens when your son starts noticing his differences? Without a diagnosis what would you tell him? We've always been very upfront with ds and he knows he's on the spectrum in a positive way but would be much harder to say oh we think you're autistic.
On the army front, my brother applied and was refused on the grounds of his eyesight more than 20 years ago. He then joined the TA now the reservists and has completed 4 tours of duty in various places still with the same bad eyesight.

Thank you everyone. You've given me a lot to think about.