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mumto2
Senior Contributor

Autism in late teens

Question to those with teens or young adults...

Is it worthwhile chasing an Autism diagnosis for a17, almost 18yo?

Backstory.

I have already spent over $1000 to a psych who was assessing my son for Autism but the last appointment when she said she would write up a letter, she was also in the middle of packing her office and changing jobs. I never got a letter, this was 2 years ago. I am not 100% sure it would have been a supportive letter as he was in erly stages of transitioning and she brushed a lot of his gender identity issues as being confused (autism gender confusion vs actually being transgender and knowing his true self)

I guess what I am wanting to understand is if he got a diagnosis, what benefit does it actually give him? He is too old for early interventions and I jus don't know what else is available. I know if he gets to Uni next year they have support in place there.

Should i chase up the old psych, since she had the assessment details and i paid her? Or should i start from scratch now I have the July bonuses in hand ?

He used to want the diagnosis, now he isn't really giving me much to go on. I know he would like me put the $ towards gender confirming surgery... (staring at a possible $12000 bill for that)

Please help me rationalize the smartest way to go. TIA

7 REPLIES 7

Re: Autism in late teens

Um, sometimes psychiatrists or psychologists like to pigeonhole people for simplicity...

 

I'm aware of a psychiatrist who told someone they were autistic (without a proper assessment) though they went there because of depression and then made blanket statements like autistic people naturally get depressed or distressed and they smiled when saying this... When it was raised with the psychiatrist. "Oh they are perceptive"... (like the person in question wouldn't notice they were smiling) and like smiling at something which is a lifelong condition wouldn't be offensive (but didn't have a proper assessment anyway so might not have the condition).

 

Supposedly there might be NDIS funding available (could contact the NDIS?)... I have no idea about how likely this is... once a psychologist who was still doing study re Masters (wasn't eligible for Medicare 10 sessions because of this) in a clinic that specialises in Autism said something about NDIS and about arranging paperwork for the disability pension... and gave a separate quote. I have no idea whether they raised this because they weren't fully booked up due to lack of experience... because they then said disability pension wasn't likely (sounded as if they mentioned the disability pension re doing paperwork to get them more work)

 

Maybe you should chase up the old psych? if she does have the old paperwork in her files without paying more money... Otherwise, maybe just don't anything about it at the moment...

Re: Autism in late teens

Hey @mumto2 and @Abcd  just wanted to jump in here and give my two cents. 

Unfortunately Autism has a lot of stigma around it, and just as much misinformation. It's very possible that some psychiatrists might not actually be able to make accurate diagnoses, and the presentation of autism can vary quite a lot from person to person. When it comes to diagnosis sometimes it is really helpful to get a second opinion if you're not really sure. 

 

Something to think about might be how a diagnosis of autism might help with self-understanding. Neurodivergent disorders like autism and ADHD can have a profound impact on a person's life, and increasing awareness of certain aspects or symptoms can help the person to make sense of themself and their identity in our neurotypical world. 

 

There's also plenty of online self-tests if your child is curious, and within the autistic community self-diagnosis is largely well-accepted, especially since accessing psychiatrists can be quite pricey as you have already seen! Getting an official diagnosis can be helpful for things like NDIS though as was said, so it depends what you're looking for. 

Re: Autism in late teens

Hi, you definitely have the opportunity for an NDIS plan if there are disabilities associated with the ASD issues. If there is mild intellectual disability as well that will assist in obtaining funding. The disability can be clearly identified when the diagnosis of ASD is determined and a 'cognitive functional assessment' is completed by the OT.

If there is no simultaneous disability along with the ASD diagnosis then an NDIS package is not warranted. Sometimes (and in the case of my son) Disabilities are overwhelming in the form of anxiety both specific and global; limited insight to social cues and daily living. Overall functioning is limited and just getting through the day is a challenge. If university attendance is really on the table then having a diagnosis will at the very least allow him to access supports on campus.

Re: Autism in late teens

Hi Mumto2 

 

It is so furstrating to hear that your childs gender diversity has led to the brushing off of their possible ASD. I was just reading the LGBTIQ Stratery discussion report and it specificaly mentions in there how that happens so often.  Interestingly there is according to that document greater % of nerodivers indivituals who are part of the LGBTIQ than not. 

 

Anyway all I can say is my wife (34) has just earlier this year got her ASD diognosis and while she was nervous and stalled about doing it. However, she has found it very helpfil to finally start to undstand herself and her experiances in life. This being said, I understand your childs wish to progress gender surgery aswell. 

 

Esentially both would start to help your child better understand and present themselves as their true self. I think both are very important but I would encourage yo to make sure you are both linked in to any supports for the transision I know people who have had help wth cost for this. Also I am thinking relaredless of whether you chase that Psych for a report you should chase her for at least a partial refund if they have not provided the service agreed. 

 

We are all locked down right now do you ave the chance to set aside some quality time to dicuss in an open and reasonable way but dedicated to talking about this. 

I would advise agreeing this in advance (1-2days) stick to the time and set a limit. Promiss no other disctractions. I have to do this with my wife for serious convrsations. planning in advance allows her time to reflect, consider and process before we sit down so she does not get overwhelmed. We also make sure it is a safe calm space for her too - blinds down, nice light, limit distractions. 

 

Good luck and I know my wife would have loved to have had such a supportive parent. Go you. 

Re: Autism in late teens

Hi I was diagnosed with Autism/Asperger's aged in my 30s. I really struggled when at University in my 20s without a diagnosis to help me understand myself or access support. Since my diagnosis I have done further study at TAFE and university & having a written diagnosis was necessary for me to access support. I found the supports really helpful.

However when I was first diagnosed I thought that a written diagnosis specifying how my workplace could support me would be helpful. This was not the case and I have been subject to considerable discrimination, bullying and mistreatment because I revealed my diagnosis in the workplace. They used the information in the diagnosis to push me out of my job saying that they were unable to provide the support that I needed. Some people do find it helpful to reveal their diagnosis to their employer, but I would urge caution.

 

I would recommend getting a written diagnosis if you can without too much expense. Often child autism assessments are expensive, as they need to be much more detailed for children, due to those reports being used to access considerable funding for supports for children. A less-formal, less-detailed assessment is probably enough for most adult usage. My diagnosis was an unexpected outcome from me accessing Medicare funded psychology sessions for depression/anxiety. They then used one of the sessions to explore if I had autism, resulting in the diagnosis. Useful for university supports, and possibly other things too.

 

Best of luck with it.

Re: Autism in late teens

YES
I got my diagnosis at 57 and it really helped me. 

A diagnosis does a lot of things.

 

Nora

 

PS this should NOT cost you.  Therapists who do not follow through are horrible IMHO.  Therapists have a duty of care which they must follow. Your therapist did not.

Re: Autism in late teens

Hello Mumto2

As a Mum who has lost their child to undiagnosed Autism, I would say a big YES. I know it is expensive, but if they can not deal with their hidden pain, it could cost them their life. My son chose that option 5 months ago, he was 19.  Left a video message to say be battled for 6 years, only 2 years that we knew of, and in that time we got him a lot of help. He was so far down the bad road that CBT and DBT courses could not help him.  This message is getting to you late I know, but hopefully you have found help since your first message on this forum. Due to what happened to me, I have started my own outreach campaign, to try and make people aware that undiagnosed conditions can cause severe harm.  I have a forum on www.autismundertheradar.com if you want to contribute and you can read some of my story on my website. I hope you have sorted all this out. It is difficult and over 18 they get charged as an adult. My son was on the waiting list for assessment, but he didn't want to wait 😞  .... regards T_A

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