Autism level 1

Guest_9872 · ‎14-06-2021

I received a diagnosis of autism level 1 in 2020, at an age in my 40s. I requested the assessment myself, after suspecting I probably had the condition. I wrongly assumed that the diagnosis would lead to a list of next steps and that doctors and psychologists would understand the condition. Neither has proven to be the case. I am not entitled to NDIS because I am level 1, not 2 or 3, and I am an adult. I managed to find a psychologist (after looking for months) and get a mental health plan. I am working out all the implications of the diagnosis and I have done a lot of reading but I have been very disappointed at the lack of support from the medical/psychological professions ( with the exception of the psychologist I managed to find) and the government. There is no recognition of late diagnosed level 1 autism in New South Wales. I believe the other states are better, even though it is supposedly a federal issue. The support groups tend to be for males, younger people or level 2/3 autism. I am the wrong demographic for most support groups. I have done a lot of investigation and found very little other than books and blogs. I personally think that level 1 autistic adults should be entitled to most or all of what we would be entitled to if we were children. We did not receive the support in earlier decades.

Croix · ‎15-06-2021

Dear Guest_9872~

I'd like to welcome you here to the support forum, I know you have at least attempted to post before, but am unable to find your messages -my apologies

It's a good move to come here as there may be others who, if they were properly briefed, may feel that they have the same condition as you do. Then together explore ways of minimizing its affect on your life.

When I first read your post I was immediate filled with regret that there was no official recourse you have been able to discover. As you say you are outside the demographic which has been considered by both the Commonwealth and a lot of the medical profession. A most unfair situation.

It may be there are autism associations that do cater for adult level 1, perhaps you might ask our own 24/7 help line (1300 22 4636) on how to find out if there are.

I did say that was my first impression. The second is I was somewhat gladdened. You, having lived so long under its shadow, have realized what has been happening to you, and found an explanation for any behavior or symptoms that you might have. That can be a comfort in itself.

You have also investigated the matter and I'm sure with perseverance will find someone in the medical sphere with whom you can relate and explore any possible matters that might be helpful.

May I ask if you are facing this in isolation, or have someone to support you? It makes a difference if you have.

You are most welcome to return and talk further

Croix

james1 · ‎16-06-2021

Hello Guest_9872,

I'm sorry to hear you haven't been able to get the support through NDIS or any state based support. It's quite unfair and, knowing a few friends who have autism, I understand how the diagnosis can lead to a myriad of questions which often go unanswered. One of my friends actually decided to not proceed with the official diagnosis (which he also had to get himself), as it seemed like there was no official benefit to getting it.

I do hope that the situation changes, even just to have more support groups to match a broader demographic. Until then, as Croix mentioned, it can be helpful to have someone supportive as you try to learn more and work out the implications of the diagnosis. We are here for you as well.

James

Boudica · ‎17-06-2021

Hello,

I am around your age, and believe I probably have low level ASD too (it runs through my family and I have a son who is level 2). I have never really considered getting a diagnosis though. I think over the years I have developed ways to overcome many challenges I faced as a child (eg. I have learned to mimic others social communication to a degree)

To be honest it is not easy to find support even for a level 2 child, who is functioning more than 7 years below his age and has struggled to adapt to school for the last 7 years. We have NDIS, but the waiting lists are long for services and turnover of professionals high, where we are, so you always seem to have a recent graduate with little experience when you first get an appointment. There is certainly no magic wand that will ease the challenges of autism. I feel for my son, his happiness relies more on finding places for him to be that adapt to his autism, rather than expecting him to change or develop.

What aspects of your life were hoping to get assistance with? The services you want may be able to be accessed through a GP and funded within limits by medicare (this is how we accessed support prior to NDIS) ie. occupational therapist, psychologist, psychiatrist. There are also informal groups around, such as social groups for those on the spectrum. I noticed there is one on meetup in Sydney. Once you start looking, I think you will find that your state actually has quite a lot of options compared to some other parts of Australia, you just need to know what you are looking for.

ASPECT is an excellent organisation which operates is NSW (I am in SA and unfortunately they do not offer services here). I have been to some excellent seminars they have run, and I know they do have adult services (possibly for those that require more substantial support though, I am not sure). They will likely know about any support groups, so I would try having a conversation with them as your first point of call, as I think they would know what is out there and be able to give you some great info.

Good Luck!

Aspie2021 · ‎18-06-2021

Thank you for your responses.

Please believe me when I say I have looked extensively. I am a very good investigator. I have spoken to all and sundry before making my original post.

I have found a psychologist (interstate, via zoom) and she essentially agrees with my perspective. Most psychologists do not understand level 1 autism in adults.

If you ring around and ask for services for my demographic, you would find the same as I have. I am not the target audience for ASPECT or the meetup group.

Guest_9872 · ‎18-06-2021

I will be ok. I was mainly trying to make a point about services not being what they could be - a topic that I do know about. 🙂

Guest_9872 · ‎20-06-2021

I must admit it hurts a lot that whenever I raise this topic, I get responses that assume I do not know what I am talking about. I end up feeling worse than I did before I raised it. I could write about all the things I have tried (including contacting Beyond Blue and ASPECT on the phone, the list goes on and on) but there are only 2500 characters in a post here, so I have to ask you to believe me to an extent. I only wanted to make the point that my demographic is not well catered for. I am not asking for a solution in the short term. I do not expect one. Acknowledgement is enough.

Guest_9872 · ‎21-06-2021

Hi Croix, my earlier posts were on a different topic. I am not seeking to discuss the details of my condition here. I am concerned about privacy and I regret saying even as much as I have said. There are a lot of places where people can read about level 1 autism. Thank you for your acknowledgement that it is an unfair situation. I have spoken with the Beyond Blue helpline as well as the National Autism Hotline, Lifeline and a range of charities that people suggested - even the Benevolent Society. You are right in saying that the awareness is a benefit. I have a psychologist I found myself. She agrees with me that there is very little in the way of services. I am not facing it in isolation but it is still a stressful situation - and a situation that most people do not understand.

Guest_9872 · ‎21-06-2021

Hi James, thank you for your acknowledgement. I think the awareness of having the diagnosis is a benefit in itself, so I wouldn't go as far as your friend in not seeking a diagnosis but I understand his sentiment.

Guest_9872 · ‎21-06-2021

Hi Boudica, I have been very strongly affected by this condition. Although it is level 1, it is not low level for me. It affects every aspect of my life. I do not need an occupational therapist or psychiatrist. I have found a psychologist (interstate). I have been looking everywhere I can think of. It has been a very intense investigation. ASPECT gave me a list of child psychologists who might be willing to help adults. The one local to me has not been willing to help - fortunately I found my own. They were unwilling or unable to help in any other way. I was triggered when you mentioned them because of this lack of assistance, which has been quite disappointing.