Possible autism diagnosis ?

[di5ney]

My sister was diagnosed 3 years ago at 16. It was cahms who diagnosed her. I dont know the full process sorry, but the diagnosis hit her hard. She struggled with being “labelled” and its only now she will talk about it etc. Good luck, its was a draining process on our family!

[firsttimemouse]

Originally Posted by Floridatilly

What area do you live in? I am shocked that it has to go through cahms. An appointment with cahms in our area are so difficult to get.
Most child diagnosis for autism, ADHD etc is started by school as there SENCO department have direct communication with the specialist.
I probably haven’t worded that correctly 🙈
It must be terribly difficult for you. Are school on board with your concerns and going private? I know our school doesn’t accept a private diagnosis (I don’t understand why though)

See more...

Thank you

She’s almost at the end of year 11 and still not had the actual final part of the diagnosis yet. So school is less relevant as she will have left by the time we get it. However we were careful to ensure that the consultant were using follows nice guidelines and actually does some work for CAMHs as well. So he’s assured us (and I’ve checked with CAMH) that any assessment will be valid in the nhs.

We have however been very lucky with school as the minute it was identified this was a potential diagnosis they have offered her the same support as if she had already had a diagnosis. They don’t wait as it takes so long. I can’t fault the senco team and i think they’re pretty confident by the way she presents at school this is a factor.

We’ve had a similar situation with the college she’s attending in September that they will support her based on the needs they can see rather than anything else. She also has a diagnosis for attention deficit disorder (confirmed ) so that is taken into account too.

It’s been hard getting there with all this but it’s been a massive help to us as the combination of these issues has made school very very hard for her over her entire journey. It’s quite difficult with girls to get to the bottom of what’s going on.

[DonnaD]

My daughter was diagnosed at 14 after we moved to the US. She had been referred to CAHMS by a developmental pediatrician she had seen but the delays were horrific.

She showed few symptoms other than sensory ones until puberty and secondary school although says she always felt different. She was completely unable to cope with the way girls' behaviour changes around Year 6 as she didn't change emotionally with them. She is 18 now but feels "stuck" at about 13. She is adopted and probably also has Fetal Alcohol Spectrum Disorder as well as lots of physical health issues so it is difficult to know what issues are caused by each.

She was actually desperate for the autism diagnosis to explain why she struggled so much at secondary school. She feels people understand her much better now. She is much more accepting of herself now as well and no longer possibly suicidal.

As mentioned, autism is very underdiagnosed in girls as it presents differently and all the old studies focused on boys. I have read many stories of women only recognizing it in themselves when their children are diagnosed. Many describe themselves as "self diagnosed " because adult diagnose can be so difficult to access.

The diagnosis has allowed my daughter to receive a homeschool scholarship here in Florida and continue to until she is 22. This is extremely valuable to her to allow her more time to "grow up". It is also supporting her application for disability as she is unlikely to ever be able to support herself. Although her other issues are a major part of her problems, the autism diagnosis is permanent and far easier for people making the decision to understand.

My daughter would definitely encourage yours to seek diagnosis. There have been no downsides to it at all for her.

[buryboy]

Thank you for all your honest thoughts.
Sounds like a bit of long journey ahead , especially in these restricted times.
Interesting that most found the diagnosis a blessing rather than a hindrance .
Just clinging to a hope that it may somehow unlock the key to the eating disorder

[VeryexcitedH]

I was going to suggest reading Tony Attwood literature, although he mainly focuses on Asperger's. His book The Complete Guide to Asperger's Syndrome was invaluable for us when we were going through diagnosis.

[DonnaD]

Originally Posted by buryboy

Thank you for all your honest thoughts.
Sounds like a bit of long journey ahead , especially in these restricted times.
Interesting that most found the diagnosis a blessing rather than a hindrance .
Just clinging to a hope that it may somehow unlock the key to the eating disorder

See more...

I have read that autism can be the most difficult to deal with during the teenage years especially for girls. Maybe this is part of why your daughter has developed an eating disorder. Mine is terrified of growing up and being independent. She also developed Generalized Anxiety Disorder and Functional Neurological Disorder. I do believe the undiagnosed autism was a big cause of both of them. It definitely can cause different physcological issues.

[buryboy]

Originally Posted by VeryexcitedH

I was going to suggest reading Tony Attwood literature, although he mainly focuses on Asperger's. His book The Complete Guide to Asperger's Syndrome was invaluable for us when we were going through diagnosis.

See more...

My DW brought some books home from school . One of them is this so appreciate the recommendation

[buryboy]

Originally Posted by DonnaD

I have read that autism can be the most difficult to deal with during the teenage years especially for girls. Maybe this is part of why your daughter has developed an eating disorder. Mine is terrified of growing up and being independent. She also developed Generalized Anxiety Disorder and Functional Neurological Disorder. I do believe the undiagnosed autism was a big cause of both of them. It definitely can cause different physcological issues.

See more...

I think we have discussed this before .
This ( terrified of growing up ) is very much part of Emma’s condition
Her favourite thing to do is to feed the ducks

[Lostbrain]

I have adhd, dx when I was in my late 30s, and the dx was life changing. Obviously I was the same person before and after, but because I was able to understand why I was different I was able to be kinder to myself and forgive myself for the things I find hard. I could understand that it wasn't a lack of effort or a character flaw that prevented me from doing certain things. It helped me understand that some things I find very difficult, others can do with ease and likewise some things I find straightforward others find really challenging.
Before I'd assumed that everything I did was quite easy because I can't even get organised enough to eat properly and most people seem to manage that.

[Lostbrain]

Originally Posted by Floridatilly

What area do you live in? I am shocked that it has to go through cahms. An appointment with cahms in our area are so difficult to get.
Most child diagnosis for autism, ADHD etc is started by school as there SENCO department have direct communication with the specialist.
I probably haven’t worded that correctly 🙈
It must be terribly difficult for you. Are school on board with your concerns and going private? I know our school doesn’t accept a private diagnosis (I don’t understand why though)

See more...

I work in SEN and have been a SENCO, we would direct families to NHS for autism or adhd diagnosis. Both need to be diagnosed by a psychiatrist or pediatrician. I don't have access to those services through school. I have 2.5 days a year with an educational psychologist, we have 1200 children on roll. I'm in Hampshire and there's no money for SEN services here at all.