This is a continuation of my NDIS series of blog posts.

The first step in applying for an NDIS package is to make sure you meet the following access requirements:
– Have a permanent impairment that significantly affects your ability to take part in everyday activities, or have a developmental delay;
– Be aged less than 65 when you first apply to enter the NDIS and meet additional age requirements if you live in SA or TAS;
– Live in Australia in an NDIS area on a specified date;
– Be an Australian citizen or hold a permanent visa or a Protected Special Category Visa

If you are aged over 65 you need to apply for MyAgedCare.

If you meet all the requirements, the next thing do is phone NDIA and ask for an Access Request Form to be mailed to you (You may say this to them in the following way: Hi, my name is Joe and I am interested in applying for an NDIS package. Would you be able to send me the Access Request Form?).

One of two things may happen when you ask them for an Access Request Form: –
1) The NDIA representative may ask you if you have time to complete a phone interview. If you say yes and complete this step they will just send out the Supporting Evidence Form to your mailing address. The Supporting Evidence Form is what your GP needs to complete.  The phone call may take 20-25 minutes to complete.
2) The NDIA representative will send to your mailing address the full-version of the Access Request Form to complete. The phone call will take about 5-10 minutes.

The NDIA representative will ask you the following type of questions: Name, Date of Birth, Address, Citizenship, Type of Disability, Pension (plus Centrelink Customer Access Number), GP details, Psychiatrist details, Psychologist details and other similar things. They may verify whether or not you are on the system, due to being linked to other services. You are asked more questions if you said yes to the phone interview, otherwise, you add all that information to the form you are sent. After completing this process they will give you your NDIS participant reference number. The representative will then say that they will post the Access Request Form or the Supporting Evidence Form out to your mailing address, the form is due 28 days from the date listed on the letterhead. So, if it says July 1st 2017 on the letterhead then it is due on July 29th 2017. From experience, I know that it can take about seven days for the form to arrive (it might arrive in your postbox on July 8th). So, be mindful of this.

If you don’t have Centrelink benefits then you will need to provide proof of residency and identity e.g. Birth Certificate, Medicare Card, Drivers License and other forms of ID. You have the option of uploading this to “MyPlace” or completing it as part of the Access Request Form.

Once you get your NDIS participant reference number you can set up your NDIS portal account (“MyPlace”) and link it to your “MyGov” account. If you don’t have “MyGov” then set this account up.

To set-up “MyPlace”, you need to speak with a NDIA representative to get a temporary access code to set up your account online. I have noticed that some people receive a letter with this temporary access code in the mail, but not all. So, you can either choose to wait until you get your paperwork in the mail to see if you get this temporary access code or just phone NDIA and ask for it directly.

“MyPlace” enables you to complete the Access Form online and also upload any supporting documentation. If you choose to post your documentation to NDIA, you still need to set-up this account at some point. This is because your NDIS Portal (“MyPlace”) is where you manage your package, appointments, referrals and events among other things when you have an approved NDIS package in place. So, gain access to this portal sooner rather than later. I have included a link to an official “MyPlace” set-up guide in the Notes section of this blog post.

Although NDIA says you have 28 days to complete and return the Access Request Form, don’t stress, you can ask for an extension i.e. an extra 28 days.

The thing that you must decide on is whether you want all your paperwork (i.e. current Diagnosis, Occupational Therapy Assessment and other supporting documentation) together before asking for an Access Request Form or after it. My recommendation would be to see your GP twice. See your GP initially to get access to specialists you have not seen, but would be able to support your NDIS application e.g. Occupational Therapists. Once this is out of the way ask NDIA for the Access Request Form. Then, book another appointment with your GP to fill out the ‘Supporting Evidence’ part of the Access Request Form. And finally, get this documentation back to NDIA as soon as possible.

Regarding getting things in order before asking for an Access Request Form, it can be quite overwhelming to request access and then have to rush through the process of compiling evidence. With lots of people applying for NDIS specialists may have a bit of a wait time. But whatever you choose to do, I wish you the best of luck!

In my next NDIS blog post, I’ll go through Areas of Need, plus how to phrase Functional Implications, Type of Support and Frequency of Support needed as it relates to Autism and Psychosocial Disabilities.

Thanks for reading!

Do you have experiences with NDIS?
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Notes:
MyPlace (NDIS Portal): https://www.ndis.gov.au/participant-portal-user-guide
MyAgedCare: https://www.myagedcare.gov.au/
MyGov: https://my.gov.au/

About a year ago, I started the journey of trying to understand my brain a bit better. Since my late teens, I found that my cognitive processing became worse over time. I found it difficult to remember things and focus on tasks at the height of my mental health issues (i.e. anxiety and depression). I think this might have been due to nervous system dysregulation (i.e. stress, anxiety, and hyperarousal) as well as pre-existing cognitive issues. So, my brain’s functioning was less than optimal. It was also less than optimal in my childhood years since a common theme in all my school reports was attention issues.

Almost a year ago now, I pursued a comprehensive cognitive assessment and an Electroencephalogram (EEG)*. These two tests showed that my brain’s processing speeds were below average; I was highly intelligent but had a sluggish cognitive tempo.

So, what my EEG tests illustrated was that I had excess theta waves in the awake state. This means that I have a rather ‘spacey’ state of mind that is associated with mental inefficiency. As a result, I will have problems with concentration, memory, controlling impulses and moods. I also have high levels of beta, which is associated with high anxiety states, OCD and PTSD among other things.

One treatment method used to improve the performance of the brain is Neurofeedback. The premise of Neurofeedback is that it is the direct training of brain function, by which the brain learns to function more efficiently. This method is based on operant conditioning. Essentially, your brain is wiring new pathways so that it works better. When you go into a session clinicians place electrodes on various parts of your head which are then linked up to a computer. You can either play a visual game or watch a DVD, it really depends on what neurofeedback gear the clinic has. As you’re completing a task your brain and the computer communicate with one another. Based on this information your brain learns to adjust itself when it gets confronted with faulty brain-wave activity as it is happening in the moment.

Sources vary with recommendations for the number of sessions needed for ‘permanent’ changes to occur e.g. between 20 to 60 sessions. I am supposed to get 40 under my current protocol and will then go for a review. I may need to get another 20 or so after that. Price per session is $100-120. So, the price is quite similar to a psychological service (e.g. counselling).

It’s taken me some time to find the motivation to find a clinic that is closer to home and reputable. I have had to factor in travel time and work hours. A motivating factor for me is that I do wish to improve my brain’s efficiency. So far, I’ve had about 8 treatments. I feel quite tired the day after treatment because as with physical exercises your brain is being exerted. I have noticed that my stress levels have lowered and it has been easier for me to focus on tasks. I am hopeful things will continue to improve over time.

I’ll provide another update when I have received a lot more sessions.

Thanks for reading!

Do you have neurofeedback experiences?
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An electroencephalogram (EEG) is a test used to evaluate the electrical activity in the brain. Brain cells communicate with each other through electrical impulses. An EEG can be used to help detect potential problems associated with this activity.

Slow Processing Speed:
http://www.davidsongifted.org/Search-Database/entry/A10782
https://www.davidsongifted.org/Search-Database/entry/A10447

Neurofeedback: http://www.appliedneuroscience.org.au/neurotherapy

It can be quite overwhelming to pursue an NDIS package, particularly when you have limited supports (family or services) to assist you with this process. I decided to write a few blog posts on this topic with the hope that it will assist some people who are pursuing an NDIS package with the process. By virtue of working in community mental health, I have the vantage point of knowing what it is like to support individuals with psychosocial* disabilities to access NDIS.

When applying for an NDIS package, there are a few paths that you can walk down i.e. autism, mental health or autism and mental health path. To receive an NDIS package you are required to have a diagnosed disability (physical or psychosocial), and this diagnosis needs to be current and relevant (i.e. less than two years old & based on the DSM-V criteria).

The simpler path to NDIS is with a diagnosis of Autism Level 2 or 3. Having either one of these diagnoses means that you do not need to have Part C of the Evidence of Disability Form completed or provide evidence of the impact that your disability has on your life. You just need to submit a diagnostic report to NDIA which provides evidence of having this Level 2 or 3 diagnosis. Most likely, those with Autism Level 2 or 3 already have supports in place that will assist them to transition across to NDIS.

Access to NDIS becomes a bit more complex for those with a diagnosis of Autism Level 1, as you must provide evidence that illustrates your lack of functionality and what supports are needed to assist you. Similarly, those who are a self-diagnosed Autistic need to provide evidence of another disability to receive supports. Psychosocial Disabilities can include a diagnosis of Schizophrenia, Mood Disorders, Personality Disorders, Anxiety Disorders, or a combination of these issues. If your current clinical psychologist or psychiatrist does not give you an Autism diagnosis, for whatever reason, then use the psychological disorder pathway for NDIS.

Here is a recent example of mine from work: I recently supported someone who had a past diagnosis of Asperger’s Syndrome to get a more current diagnosis.  It is unclear whether this past diagnosis was official since no documented evidence exists. Upon review, the psychiatrist did not include an updated diagnosis of Autism in the diagnostic report. This may be due to the psychiatrists limited understanding of neurodevelopmental disorders; their specialisation was adults and old age. Instead, the psychiatrist listed PTSD, Anxiety, Depression, Eating Disorder-NOS, and Cluster-B Personality Disorder (i.e. Borderline, Narcissistic, Histrionic and Antisocial). In my opinion, it is not worth pursuing an Autism diagnosis via a psychiatrist if you’re time-pressed or have already started the application process and received (or completed via phone) the Access Request Form. Most psychiatrists have wait-lists (sometimes really long wait-lists) and it can also be challenging to find a good one. So, the mental health route is good enough for now, especially if you have a very good documented history of seeing your psychiatrist.

I recently participated in an e-conference for professionals seeking information about working with persons with Autism and Mental Health issues. One person that I interacted with in chat seemed to think that based on one’s current functionality a person with Autism Level 1 could receive supports under the Autism-only path. To me, this doesn’t make sense as the three levels of Autism are based on functionality and how much support the individuals need. There is no official information about this with regard to NDIS. But, one would think that if the functional impact was more severe or became more severe the person would receive an Autism Level 2 diagnosis. So, in my opinion, the only other thing that would increase the severity of Autism Level 1 is co-occurring Mental Health issues.

I would advise that when you’re applying for NDIS that you do not entirely rely on the General Practitioners (GPs) Functionality Assessment which is included in the NDIS Access Request Form that is posted to your mailing address. When I have been supporting clients to see GPs and psychiatrists they often fail to understand how psychosocial disabilities apply to NDIS. The GPs/Psychiatrists that I have interacted with also continue to fail to understand the relationship between psychosocial disabilities and NDIS when you give them examples and provide them with support tools. Your GP doesn’t get to see you in your home or the community, so they can’t properly assess you. They don’t really know you well enough. Perhaps things will improve over time when GPs and Psychiatrists go through their own training processes, and begin to understand what questions to ask people in relation to NDIS and psychosocial disabilities.

A lot of GPs are time poor, so they often want to rush through paperwork. They also do a sloppy job when they take the form to complete it at a later time. So, what ends up happening is that professionals will write “no support needed” or leave things blank under areas of need. I had this happen to a client the other day, her GP wrote no in all areas of functionality even though she has high psychosocial needs. The areas of need being: Mobility and Transport, Communication, Social Interaction, Learning, Self-Management, and Self-Care. Identifying areas of need is essential to getting an NDIS package. So, this sloppiness without additional supporting evidence will probably lead to a rejection letter from NDIA*. You can have your case reviewed, but it’s best to take steps to minimise this eventuality.

So, my advice would be for those with current supports in place to accumulate evidence through support letters from support workers/case managers and reports from psychologists, psychiatrists, and occupational therapists. All of which need to be less than two years old. The more current a document the better it is. For those of you without professional supports, my suggestion would be to not only provide diagnostic reports that outline your disability but to consider pursuing an Occupational Therapy (OT) Assessment. This is advice also advice I give to those who a reticent about getting a mental health diagnosis.

If you meet the eligibility criteria, it is worth pursuing a chronic disease management plan from your GP, as this will enable you to get rebates for seeing an OT. To a total of five sessions. A good OT report will include the following things: background & known medical information, social circumstances & supports, personal presentation at the assessment, cognitive function & mental state, current supports in place, overview of home environment, activities of daily living, and issues and support needs identified, and lastly assessment summary and professional recommendations. The exploration of all of these domains by a professional will assist to support your application for an NDIS package.

In my next post, I’ll go through the application process.

Thanks for reading!

Do you have experiences with NDIS?
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Notes from this blog post.

Psychosocial Disability: Term used to describe the experience of people with impairments and participation restrictions related to mental health.
NDIA: The National Disability Insurance Agency, an independent statutory agency.
NDIS: The National Disability Insurance Scheme, a healthcare program initiated by the Australian Government for Australians with a disability.

Chronic Disease Management Plan:
https://www.humanservices.gov.au/customer/services/medicare/chronic-disease-management-plan

Autism DSM-V:
http://nspt4kids.com/healthtopics-and-conditions-database/autism/
http://raisingchildren.net.au/articles/dsm-5_autism_diagnosis.html
https://www.psychology.org.au/publications/tip_sheets/autism/
https://www.autism.com/news_dsmV

Spatial Auditory Processing Disorder (SAPD) falls under the umbrella term of Central Auditory Processing Disorders (CAPD). Spatial auditory issues occur when the normal auditory processing capabilities of the brain are not able to selectively focus on sounds coming from one direction whilst suppressing sounds coming from other directions. The result is a frustrating inability to hear and locate certain sounds in the immediate vicinity of a listener. SAPD can go hand in hand with Autism. So, my recommendation is to go get tested to rule out this condition if you’ve never seen an audiologist before.

Central Auditory Processing Disorder was one of the things that were never brought with me with specialists when I received my adult diagnosis of Autism.  I can say it was an issue I was aware of but never had a name for. For instance, I always had trouble hearing what someone was saying next to me in a crowded room or I could pick up a private conversation on the other side of the room at work. I received a diagnosis of Spatial Auditory Processing Disorder shortly after my comprehensive cognitive assessment. When my results were reviewed by the clinician it became apparent that I experienced issues with my hearing, but needed further testing to pinpoint what exactly the issue was. I then went to my general practitioner to receive a referral to see an audiologist so that I could undergo testing on my hearing.

The testing at the audiologist took approximately 1.5 hours. The results of that test, which came around a week later, was that I had Spatial Auditory Processing Disorder. Treatment included continued sessions with the Audiologist.

If you fit the criteria for the Chronic Disease Management Plan, then your GP will be able to assist you to get rebates five sessions with the audiologist. Also, with the right private health insurance, you might be able to get sessions. Otherwise, you’ll need to fund full treatment at your own expense. And that can be costly (e.g. from $140 per hour).

Thanks for reading!

Have you seen an audiologist?
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Most of us have heard the saying that no two people with Autism are alike. A comprehensive cognitive assessment is an individualised process, it enables you to identify your strengths and weaknesses. Cognitive tests assess your concentration, memory, organisation, reasoning, problem-solving, decision making and higher level cognitive capabilities. It helps to determine whether there are any other underlying issues e.g. ADHD. Identification is important because it allows you to identify where you may need support.

I received a diagnosis of Asperger’s Syndrome approximately three years ago. When I pursued my Asperger/Autism diagnosis it was never suggested to me that I could undergo further testing to see how this condition uniquely affects me. I assume this is because it is usually children who undergo testing for early intervention and supports. I am a little too old for early intervention, so my reasons for pursuing an assessment was to ascertain whether or not I had ADHD (inattentive type). My personal history (my recollections, school report cards, GP notes, and observations by others) showed that I had issues with attention throughout schooling. However, no interventions took place to rectify this issue with attention. I assume this was partly due to not being disruptive in class (i.e. ADHD – hyperactive type). Perhaps teachers assumed it wasn’t such a big deal and I would grow out of it or they just weren’t educated in such matters, who knows. Nevertheless, this lack of anything perpetuated my struggles throughout schooling and beyond.

I can say that another added complexity for me is emotional dysregulation (aka central nervous system dysregulation). I have a history of depression and anxiety, due to complex family and social history. This ‘complex-trauma’ can cause emotional dysregulation. Emotional dysregulation also goes hand-in-hand with autism. Symptoms of central nervous system dysregulation from trauma or anxiety can create similar problems with organisation and attention as conditions like ADHD, or it may add further complexities to underlying cognitive issues (e.g. ADHD).

During my first university degree, my grades went down at the height of my anxiety and depression. I worked through some of those issues on my own before and as I was completing another degree. For this latter degree, I was able to achieve an award of academic excellence. This was in spite of still experiencing issues with fatigue, concentration and brain fog. So, to outsiders, it is easy to think that it was my mood disorder that impacted my ability to focus and excel. I know it wasn’t the whole picture, as I still experience issues with organisation, concentration and decision making even though I no longer have clinical depression or anxiety as bad I had about eight years ago.

In my experience, I have found that professionals tend to consider presenting issues above all other considerations or possibilities. This creates unwittingly creates barriers. From their point of view, Occam’s razor, the simplest explanation is usually the correct one.  In these circumstances, you need to persevere with what you know is best for you even when the professional is walking down the garden path. If you find yourself having an emotional response to the situation then step back and give yourself a moment to consider the consequences of having an emotional reaction. Strong emotional reactions tend to put people off, especially when it causes their stress response to go off. So, despite what professionals may say just pursue the testing anyway to rule out whether or not you have an underlying cognitive condition.

The comprehensive cognitive test usually goes for a number of hours. You are given numerous tests in Abstract Reasoning, Verbal Reasoning, and Numerical Reasoning among other things. The outcome of my cognitive assessment was that it identified that I have sensory processing disorder. It also revealed that there is a big discrepancy between my intellect (gifted range) and working memory capacity (below average). This discrepancy is called twice exceptional (i.e. gifted with a disability). And it accounts for my lifelong frustrations and challenges with everything. These challenges of mine are not solely due to mood and anxiety disorders.

This process of investigation has brought up feelings of hurt and injustice. Hurt because I have been hard on myself due to my failings (some failings that were outside of my control) and that due to my strengths masking my disabilities I never received support.

The outcome of all this, I have to put thought into whether I wish to pursue the ‘treatment?’ program which is neurofeedback.

Further Reading:-
http://www.addrc.org/high-iq-kids-with-adhd-brown/
http://www.dystalk.com/talks/38-iq-tests-explained
http://sharpbrains.com/blog/2009/05/10/10-students-may-have-working-memory-problems-why-does-it-matter/

Thanks for reading!

Have you had a cognitive assessment or considered having one?
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I agree with the viewpoint that everyone on the Autism Spectrum is different, due to having different personalities, presentations, challenges, strengths and lived experiences. So, my work with individuals diagnosed with autism is not a one-size fit all.

I am not employed as a peer worker in mental health, so I don’t typically disclose my condition with those I work with. The exception to this being if I make the professional judgement that it might be beneficial to the individual’s mental health recovery journey. For those of you that don’t know what a peer worker is, a peer worker is someone with a lived experience (it can be a consumer* or carer) that is specifically employed to use their experience to support others and foster hope. In mental health, there is a real push towards employing more peer workers to advise, teach and support other consumers and professionals.

So, what I find commonly occurs on the job is that fellow autistics see me as non-autistic, even after working with them for a long period of time. They’re not able to see the signs of autism in me.  Perhaps they’re not anticipating a mental health worker to be a fellow autistic or are blind to the obvious, who knows. This is similar to my colleagues, they’re not able to consider the possibility that I might be autistic. Because autism and social worker are not something people consider as going together. It is an interesting position to be in, that’s for sure. Prior to working in mental health, I had never had the opportunity to interact with other individuals on the spectrum. So, it is definitely an exploratory time for me,  as I work towards navigating through this uncharted area.

Below, I’ll go through things that I find to be challenging at work or things that I notice pop up a lot.

Social chit-chat
Part of my current role in mental health is to assist people to develop social skills. This includes developing conversation skills, understanding body language, and understanding personal boundaries among other things.

At present, I find it challenging to engage in social chit-chat with other individuals on the spectrum. When safe topics* are exhausted I am pushed to draw on creative ways to engage individuals in continued conversation, particularly when the autistic individual does not say much at all. Or the person doesn’t see the point of developing social skills. due to a variety of reasons (e.g. experiencing bullying or ostracisation at school). So, this continued conversation usually centres on the other person’s topics of interest.

I find that community mental health services seem to suit individuals who are not good at reciprocal conversation, as it is the worker’s role to be attentive, reflective and an active listener. This means that some individuals, will at times, purposely or instinctively reach out for services because they don’t need to have the to-and-fro talk that goes hand-in-hand with social relationships, yet still, fulfil their need for social connection. Unfortunately for these people, our work as mental health workers is to build capacity in people and not create dependency issues, so we will actively work towards connecting people with a community. This over-dependency on services is quite commonly seen with individuals I support who have a diagnosis of Cluster-B Personality Disorder (e.g. borderline, narcissistic, antisocial and histrionic).

Some autistic individuals with complex trauma histories can be quite focused on making sense of their story and will repeat this story over and over again. Because they have a good autobiographical memory this retelling can be quite comprehensive and time-consuming. This behaviour is not helpful as it causes retraumatisation and does not necessarily lead to the resolution of trauma. Moreover, when people overwhelm themselves by picking at their wounds constantly they lose their capacity to effectively regulate their emotions because their thinking brain has switched itself off. To have the best chance of effectively dealing with trauma issues you need to educate yourself about the nature of trauma, and take a holistic approach i.e. self-care strategies, build social supports, and engage in therapeutic help.

I find that some autistic individuals don’t give you much opportunity to have a discussion with them, as they will talk quite happily without pause for an hour or so because they are too caught up in the retelling of their own experiences or whatever else is on their mind. This self-monologuing may not always be intentional. You deal with this behaviour to an extent in this industry because it is what you are paid to do, however, it doesn’t work so well in social relationships or even at appointments where time is limited. This type of communicative behaviour can, quite frankly, annoy people.

So, then you need to be abrupt with people who are self-monologuing to get them to stop talking. This abundance of sharing also extends to text and email correspondence. Professional boundaries need to be firm, as too many allowances seem to give people permission to send prolific texts and essay-length emails in between appointments. Generally speaking, I notice flares of prolific texts and emails happen when people feel overwhelmed or lonely, and due to a lack of capacity to emotionally regulate they reach out for help in what they perceive to be a ‘crisis’. I like writing essay-length things too (take this blog post for example :)) because I like to think that it gives people the full context on a certain topic, but as a worker, this is very hard to respond to when you have a full client load and need to attend to other clients. For Cluster-B personality disordered individuals this boundary-setting is perceived as an offence and is something that gets them emotionally triggered even when you explain your reasons politely but firmly. The reasons for this behaviour I will not go into here, perhaps another time.

Some individuals are quite fragmented or jumbled when they speak to others; they talk about something which then brings to mind another association, which then brings to mind another association to talk about and so on. For example, one person I worked with was talking about their present situation, which then led to the retelling of a predecessor’s experiences, which then led to an opinion on politics, which then led to an opinion on money, which then led to a discussion of their present circumstances, and so on. For people who are not able to contain and process this huge amount of information (i.e. neurotypicals and autistics that need time to process verbal information), it can be quite challenging and frustrating to deal with. So, as with prolific emails, texts and conversations it is important to work towards the ability to keep things simple and succinct for the sanity of all.

Employment
In most situations, one of the main issues for those entering support services seems to revolve around employment. I have seen a big difference among presenting age groups. For instance, those who received a diagnosis much earlier in life already have accommodations in place such as provisions at school. Nevertheless, they still seem to struggle with issues of employment once they leave high school or university. The main difficulty I see that comes up is not understanding interview processes or the need to develop basic social skills for work.

Disorganisation
Due to issues associated with executive functioning and working memory, remembering and keeping appointments can be a challenge for some autistic individuals. Often people with autism have slower processing speeds than the average population. This disorganisation also comes up when deadlines need to be met and important paperwork organised, however, disorganisation is often exacerbated by anxiety. The anxiety causes overwhelm and can interfere with the process of knowing what to do and how to do it.

Sensory Issues and Sensitivities
Most individuals with autism experience sensory issues. Sound sensitivity seems to be a common complaint. This sound sensitivity is often the result of spatial auditory processing disorder. Another issue that comes up is scoptic sensitivities i.e. sensitivity to lights. Olfactory (smell) sensitivities are something to be mindful of when working with people with autism. I don’t see tactile sensitivity much in the population I work with. However, interestingly enough, I do work with someone at the moment who doesn’t have autism but chronic fatigue syndrome and she/he seems to have all of the aforementioned issues. Probably developed over time due to something going wrong with the regulation of her central nervous system.

Voicing Needs
A lot of individuals with autism have trouble with voicing their needs in a clear and succinct way. I notice that they will either say a lot but lack the capacity to get to the point, or they voice too little and this requires you to do a lot of prompting to find out what their needs are. The latter could also be because they’ve never considered such a thing before and this new information requires time to process.

Issues with Identifying and Expressing Emotions
I’ve worked with quite a few individuals with flat affect but who still experience a lot of anxiety issues. When you explore what they are feeling they are not always able to put a name to it. People with autism often have trouble identifying certain emotions in others. This is called alexithymia.

Thanks for reading!

I’ll probably go into more detail with some of these topics at a later date.

Have you worked with other autistic individuals, what was your experience?
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Following on from my last post about work. I thought I’d write a bit about my experiences in meetings, training and group work in community services.

A big part of social work and other related community services jobs is networking. If you have had the fortune or misfortune of attending an interagency meeting you will quickly find that it becomes really hard to hear things clearly when you have auditory processing issues. This is especially so when you have several groups of people talking at the same time; networking. Sharing information about themselves, their service, their programs and other gobbly-gook. Most workers have already established connections with each other from previous and other events, so you notice that they move off into their own separate bubbles during tea-break. I think that as I am relatively new to this job I can initially get away with coming across as “shy” to others.

I usually spend the better part of these meetings trying to figure out what is expected of people at these gatherings, as well as keeping my interactions limited to the people sitting right next to me.  I notice that I do feel quite bored at these meetings and this is probably due to personal expectations. My strategy going forward, only attend meetings that are really relevant to my current role.

Training is fun, but it becomes a challenge when people start to whisper because of the aforementioned auditory issues. The whispers compete with the instructor’s voice and I can’t tune them out. It also becomes a bit annoying when people start eating. To get through training I tend to take a long walk on breaks or sit under a tree. I don’t consider socialising at training to be pertinent because I don’t ever see most of these coworkers again, for the reason that they work in different regions of Sydney or NSW. So, socialising for the sake of it is usually just draining. At training, I make sure I sit relatively close to the front of the room so that if there is a lot of competing noise I can hear the instructor. Noise is something you just have to learn to bear. You also need to remain self-aware and manage your stress levels.

I have encountered similar experiences with noise when I have gone with a client to noisy shopping centres or cafes, or when I am in their home and their windows are open and the street has a lot of traffic.  It is something you just have to learn to work with. To manage, I tend to find the quietest spot in the room and get the person to repeat themselves if I can’t catch what they have said. To refresh/recover from client meetings, I usually space appointments out so there is time to process what has happened.

I don’t particularly like group-work, as people don’t seem too engaged in group activities. It can also be hard in the sense that non-autistics intuitively know when they can insert themselves into conversations. I have not mastered this skill yet, I try to wait for pauses but sometimes accidentally talk at the same time as someone else. You also need to respect the hierarchies at team meetings, but sometimes this is hard to do when you know the other person has made an error. So, learning tactful and persuasive forms of communication is helpful when dealing with these situations.

One site I particularly like for communication skills is
Skills You Need: https://www.skillsyouneed.com/
Another is the Art of Charm: https://theartofcharm.com/

That’s it for now.
Thanks for reading!

What observations or issues have you had in groups, events and meetings?
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It’s been about two months since I first started at this job. From past experiences, I have learned not to say too much about myself, to begin with. I have found that people at work can be quite inauthentic when you initially start to get to know them. People are odd that way. They are also contradictory. It’s good to maintain strong personal boundaries and to share things only on a need to know basis.

I decided to take the disclosure route with this job (when I underwent interviews), even though I have had bad experiences in the past. I haven’t asked for any accommodations nor has the organisation offered any to me at this time.

I found the first few weeks a bit tiring. I was trying to figure out the social politics in the workplace (a predominantly female dominated workplace), as well as understand all the policies and procedures. I tend to find that I spend the first few weeks at work creating a set of rules in my head to follow. Generally speaking, I still feel a bit tired and find I don’t have much motivation to do much outside of work. I have, at present, given up my normal exercise routine and don’t do much on weekends (unless it’s absolutely necessary). It’s almost become my recovery period for me. I find I don’t have much attention for studies either at this time. It seems a bit repulsive to me (probably due to being overwhelmed/overstimulated). I find this a pain, as I do have my psychology course starting back up at end of February and I need to complete my Cert IV in Mental Health by July. The latter for the reason that they’re changing the course structure.

Some annoyances in the office that have come up include the close proximity to other workers. I get a bit agitated, especially when tired, when people type loudly, eat loudly, and talk loudly. I bought earphones and earplugs to help minimise the noise (sensory input). I am finding that I need to carry my sunglasses with me at all times because it is just too bright outside and sometimes inside too. I am wondering if I should get myself tested for scoptic sensitivity (Irlen Syndrome).

My GPS is my friend. I need to drive quite a bit for this job, so my GPS has been my companion on my adventures. If I didn’t have it I’d imagine I’d start to panic because of the fear of ‘not knowing where I am going’.  I am avoiding one of the company vehicles because of my lack of spatial awareness. I accidentally scratched it (against a pole) in an underground carpark trying to manoeuvre it into a tight car space. Whoops! I felt a bit mortified about it, as I had only been on the job for three weeks. So, I am now going for cars similar to my own personal car in size.

I am finding it a challenge to maintain social chit-chat for more than 1.5 hours at this time. I find, particularly with clients who experience social isolation, that we tend to exhaust all safe topics of conversation quite quickly. Talk also becomes a bit repetitive if I see them weekly. This chit-chat is necessary for the rapport building process. So, I have been trying to get people to talk about their interests. I feel like it might be beneficial for me to re-read some books on social chit-chat.

I think I will leave it at that for now.

Thanks for reading!

What challenges have you encountered at a new job?
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In Australia, gaining affordable supportive services for Autism is dependent on whether or not you qualify for NDIS (that is, if NDIS has rolled out into your area). It also depends on your age! Those aged 18 and above may encounter difficulties obtaining support services. Individuals who have received a late diagnosis or those labelled as ‘borderline’ or ‘mildly’ autistic will also encounter barriers when seeking support.


Employment Help?
There are a few services that can be accessed to receive assistance in finding and maintaining employment. I am not going to be providing recommendations, as I believe that quality is dependent on location and staff, and not just the service provider itself. There is a lack of consistency across services, as some just try to meet their quotas and don’t offer much help at all. For instance, you might have one job service provider that is fantastic, in let’s say, North Sydney but is quite poor in Bankstown. So, my recommendation would be to look at reviews online or just try it out to see if it suits your needs.

Nova Employment – Disability Service.
http://www.novaemployment.com.au/
This service is free (as it is government funded), however, you need to meet their eligibility criteria: To participate in this program, you must have a disability, or a permanent medical condition or significant barriers to employment.

ASPECT – Autism Spectrum Australia
https://www.autismspectrum.org.au/aspectcapable

ASPECT’s employment help  (Aspect Capable) is not a free service. I am not sure what the current rate is per hour, but I think it is somewhere between $60-80. If you are feeling stuck and want a mentoring service with a good understanding of Autism Spectrum Conditions then ASPECT is something you could consider.

My only critique about employment services is that they may box you in, simply for the reason that you have Autism. For example, the misconception that the only work deemed okay for people with Autism are things like factory work, computing, gardening or working in warehousing. It’s true that there may be some things you’re not suited to, however, it shouldn’t be ruled out as impossible (or not worth trying).


Mental Health Support?
I suppose that working in community mental health makes me privy to the various barriers and strengths that exist within the system. I have found that not all workers are fluent in ‘spectrum conditions’ and misunderstandings arise because of this. I presently work with a few individuals diagnosed with an Autism Spectrum Condition, and I liaise with other workers who work with individuals on the spectrum.

In terms of free support, the government provides funding for several programs run through NGOs.  These programs exist to assist those ‘suffering’ from mental illness to work toward their recovery goals. You are partnered with a support worker who will provide practical support, social support, and greater access to community participation among other things. Support is usually relinquished when the participant no longer needs someone to walk alongside them (i.e. they have developed a greater capacity for independence).

Remember, the focus of these programs is for Mental Health Recovery and not Autism Spectrum Conditions. So, if you want to access support that is specifically developed for those on the spectrum you would need to find an organisation that provides this service, and often at your own expense ($$$).

Programs include:-
RichmondRPA (NSW and QLD only):
Provides a range of services, including support for women and children, youth, and adults.
https://www.richmondpra.org.au/our-services

Compeer (through St Vincent de Paul Society):
An international program to support individuals faced with social isolation by matching you with a volunteer.
https://www.vinnies.org.au/findhelp/view/113

Personal Helpers and Mentor Service (PHaMs): –

You can self-refer to this program. However, you need to be aware that some areas aren’t taking referrals at this time or may have a wait list due largely to demand.
https://www.dss.gov.au/our-responsibilities/mental-health/programs-services/personal-helpers-and-mentors-phams

Neami National:-
Offers several services, including community outreach and peer-led programs. It’s probably best to check your location on their site to see what services are available.
http://www.neaminational.org.au/our-services/community-outreach-support

Headspace:-
For those aged 12-25. Again, be aware that depending on what area you live in there could be a long wait-list for psychological support! They’re also a little adverse to those considered ‘too complex’, as it challenges their current capacities. They’re not able to offer long-term subsidised assistance and generally, young people who attend this service have more straightforward depression and anxiety. They will receive 10 sessions, as per better access scheme with the potential to extend (it’s up to the practitioner’s discretion). http://headspace.org.au/

Mindspot:-
Free national telephone and online service, for anxiety and depression
https://mindspot.org.au/

Support for day to day living program:-
Another government initiative which focuses on providing structured and social-based activities. Again, you need to check the website to see what is available in your location.
http://www.health.gov.au/internet/main/publishing.nsf/content/mental-d2dl

Lastly, another alternative is asking your GP to refer you to one of those rare psychologists who bulk-bills.  You can also access private services if you have private health insurance.


Service Coordination.
In Australia, federal and state governments fund programs that facilitate the coordination of supports. This means that these organisations build a picture from your story and link you into the appropriate supportive services (a holistic approach).

New South Wales ONLY- Abilitylinks (Disability):-https://www.adhc.nsw.gov.au/individuals/inclusion_and_participation/ability_links_nsw
You will need to visit the site to see which organisation is the lead in your area.

All States and Territories – Partners in Recovery (Mental Health):-
http://www.pirinitiative.com.au/index_public.php


Social Support?
In terms of social supports, there are mainstream supports and peer-led groups.

ASPECT facilitates social networks and social groups.
https://www.autismspectrum.org.au/content/adult-social-networks
https://www.autismspectrum.org.au/adultsocialgroups

Autism Community Network
http://www.autismcommunity.org.au/acn-services.html

Meetup.com
This site has a number of Autism/Asperger groups. You’d need to search for what is in your area. Alternatively, you can look up groups along a similar vein, for example, shy and socially anxious. You can also join groups that align with your personal interests.

ASPIA – Group for partners of individuals with Asperger’s
http://www.aspia.org.au/groups.html

New South Wales
Diverse minds, located in Erskineville (Sydney), runs an adult female group (18-35) and an adult group (for those aged between 20-30).
http://www.diverseminds.com.au/services/groups/

Queensland
Asperger Centre –
Has links to several groups for individuals with Asperger’s
http://www.asperger.asn.au/

Victoria
Asperger Victoria – Adult monthly meetings and social events
http://www.aspergersvic.org.au/as-adults/

South Australia
Nothing at this time

Western Australia
Autism West – Chat time
http://www.autismwest.org.au/index.php/18-and-over/

Tasmania
Nothing at this time

Australian Capital Territory
Autism Asperger ACT – Discussion Group
http://www.autismaspergeract.com.au/our-services/autism-asperger-discussion-group/

Northern Territory
Nothing at this time


Assessments and Private Psychological Support!
Personally, if I were to go for an assessment or pay for psychological services I would find a place that specialises in autism. If you are female, a clinic that is familiar with female presentations would be best. Sessions can be quite expensive if you pay from your own pocket, anywhere from $200-$350. You might be able to get discounts if you have a concession, are experiencing financial hardship or if they have a student (registrar) psychologist at the clinic.

Regarding seeking support through more generalist clinics. I am not saying this is the case for everyone (some people might have had a good experience), however, I have heard quite a decent amount of people retell experiences of grief at having gone through generic psychological services i.e. depression, anxiety, schizophrenia and bipolar disorder among other things. This is due largely to professionals lacking an awareness and understanding regarding Autism Spectrum Conditions.


Psychiatrists
Finding a good psychiatrist can be challenging. Your General Practitioner (GP) may have a list, but it is usually a good idea to do your own research. And to ring a psychiatrist’s practice inquiring after wait lists before you see your GP for a referral. Unfortunately, some psychiatrists have a wait list that lasts months.

Under the Better Access Initiative, Medicare subsidies are available for any patient referred by a doctor for 50 sessions each year (compared with 10 sessions for a psychologist). However, you will need to have a severe and persistent mental illness to be eligible for this scheme.


More on the Better Access Initiative:
The Better Access initiative was introduced to address low treatment rates for common mental disorders such as depression and anxiety, particularly presentations of mild to moderate severity, where short-term evidence-based interventions are most likely to be useful. The number of treatment sessions required for mental disorders depends on the diagnosis, duration and severity of the particular disorder. Under this initiative, patients can access Medicare rebates for up to 10 individual allied mental health services per calendar year and/or up to 10 group therapy services.

To access Medicare services under the Better Access initiative, you will need to visit your GP who will assess whether you have a mental disorder and whether the preparation of a GP Mental Health Treatment Plan (MHTP) is appropriate for you, given your health care needs and circumstances. If you are diagnosed as having a mental disorder, your GP may either prepare a GP MHTP, or refer you to a psychiatrist who may prepare a psychiatrist assessment and management plan. Alternatively, your GP may refer you to a psychiatrist who, once an assessment and diagnosis is in place, can directly refer you to allied mental health services. Further information on the Better Access Initiative is available at:http://health.gov.au/mentalhealth-betteraccess.


Thanks for Reading!

I’ll probably create another post at a future time to reflect the implementation of NDIS, so stay tuned!

What services do you have or what services have you found?
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This is pretty self-explanatory. I have compiled a list of books specifically written about or for women with Autism or Asperger’s that I have read and would recommend. It is by no means a comprehensive list.

shoppingWomen and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age. Written by Sarah Hendrickx.
The difference that being female makes to the diagnosis, life and experiences of a person with an Autism Spectrum Disorder (ASD) has largely gone unresearched and unreported until recently. In this book Sarah Hendrickx has collected both academic research and personal stories about girls and women on the autism spectrum to present a picture of their feelings, thoughts and experiences at each stage of their lives.

4220133Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen and Teenage Years.
Written by Shana Nichols.
Growing up isn’t easy, and the trials and tribulations of being a teenager can be particularly confusing for girls with Autism Spectrum Disorders (ASDs). This book covers all the concerns commonly faced by girls with ASDs and their parents, from periods and puberty to worries over friendships and fitting in.

nakedTwirling Naked in the Streets and No One Noticed: Growing Up With Undiagnosed Autism. Written by Jeannie Davide-Rivera.
Jeannie grew up with autism, but no one around her knew it. Twirling Naked in the Streets will take you on a journey into the mind of a child on the autism spectrum; a child who grows into an adolescent, an adult, and becomes a wife, mother, student, and writer with autism. This is a gripping memoir of a quirky, weird, but gifted child who grows up never quite finding her niche.

download.jpg
Safety Skills for Asperger Women.
Written by Liane Holliday Willey, EdD.
Written for females with Asperger’s Syndrome to aid them in negotiating daily struggles and staying safe. It discusses a variety of social situations and issues such as bullying, self-harm, depression, and eating disorders and encourages readers to recognize that they can live happy, full and independent lives.

download (1)The Aspie Girl’s Guide to Being Safe With Men. Written by Debi Brown.
For Aspie girls and women, dating and sexual relationships can be confusing, intimidating and potentially dangerous. Even if actively avoiding romantic relationships or sexual encounters, a lack of understanding about the acceptable social interaction between men and women can leave Aspies vulnerable to negative experiences. It is vital, therefore, that the facts and unwritten rules about sexual conduct and relationships are clearly laid out for girls and women on the spectrum.

contentThe Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum. Written by Robyn Steward.
Certain characteristics of autism, such as difficulty understanding social cues, may make women vulnerable to potentially dangerous situations. Robyn Steward has written this supportive guide to help all women on the autistic spectrum live independently, make their own choices in life, and be safe whilst doing so.

517yeSi66CL._SX329_BO1,204,203,200_Life on the Autism Spectrum – A Guide for Girls and Women.
Written by Karen McKibbon
Why is Autism Spectrum Disorder so misunderstood in girls and women and why do so many go under the radar without the support that they need? This practical guide explains the unique issues that affect females with autism and provides tools and strategies that girls, women and their families can use in day-to-day life.

What books have you read and enjoyed?
Leave a comment below.