Does My Child Present with PDA Profile of ASD?

PDA Guidance

Introduction – This is a general guide for parents to help them establish if their child is presenting with a typical presentation of an autism spectrum disorder (ASD) such as Asperger’s Syndrome or Pathological Demand Avoidant (PDA), which is a different profile of autism, seen in some individuals on the spectrum.  N.B. This guide is by no means exhaustive and there will always be exceptions to the rule.

ASD is a spectrum that is complex, overlapping and can affect individuals to varying degrees.  Therefore, it can sometimes be very difficult to differentiate between the different profiles and some children may have an overlapping profile, where features of two distinct profiles such as Asperger’s and PDA or classic autism and PDA are overlapping without either being distinct.

Please note that where a child fits on the spectrum can only be accurately and officially determined following an assessment by an experienced multi-disciplinary ASD diagnostic team. But, because awareness, understanding and…

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Making it personal.

I wrote about the structure and purpose of the DARE scheme in Who DARES, wins  and have received many queries from students and parents about the personal statement element of the application process.  Every year this task causes feelings of apprehension and anxiety for many applicants, so I am sharing here some general advice about how to approach this, bearing in mind the completion deadline of 1st March.

dare-personal-statement

The personal statement is Question 5 of the online application DARE form, that students complete within their CAO account.  As stated on page 15 of the DARE Application Guide, it provides students with an opportunity to describe in more detail, the impact of disability in the classroom, the school environment, and in completion of academic tasks. It is an important piece of supplementary information for Disability Services (DS) in colleges, universities, and Institutes of Technology.  After accepting a CAO offer, the DS contacts the student to organise a Needs Assessment meeting, at which both parties discuss and agree upon the most appropriate supports and reasonable accommodations.  As the number of students with a disability registering in college may be as many as 200 (depending upon the size of the institution), it is extremely useful for DS staff to have prior knowledge about the strengths, challenges and needs of each student.

Section B Educational Impact Form must be completed by the school, and on page 2, the student must respond to the following question:“Please ask the applicant: Has your educational experience been affected by your disability/condition in any of the following ways? Record their response to each of the following:

  1. I needed and received supports in school or exam accommodations.
  2. My school or class attendance has been disrupted.
  3. It has impacted on my overall experience of school.
  4. It has impacted on my school exam results and learning.
  5. I have experienced other educational impact not listed above.
  6. I have a Specific Learning Difficulty and my literacy and/or numeracy abilities have been impacted on.”

It is very important for students to think about and discuss their response to this question with parents, guardians or carers, before they meet with a member of school staff to complete the form. To meet DARE eligibility requirements, students with a Specific Learning Difficulty must meet Indicator 6 plus one other indicator. All other applicants must meet any combination of two indicators from Indicators 1 to 5.

Therefore, the personal statement should match the factors that the student indicated as having had an impact on their education. Students can include comments about any aspect of school that they have found challenging, difficult, or obstructive.  This might include their performance in tests and exams, access to books and other materials or resources, access to teaching and instruction, issues with memory or concentration, the effect of any mental health condition, problems with time management and organisation, difficulties with attending school, supports received such as resource hours, technology, or help from an SNA.

It is not necessary to provide an essay type statement, it is acceptable to write in bullet points; the important thing is to communicate exactly how disability has impacted on the experience of secondary education. So a personal statement based on Impact Indicators might look something like the following example.

Patrick is a young person with a diagnosis of Autism Spectrum Disorder, Dyspraxia, and depression.  Patrick has used a laptop in the classroom since 2nd year, and uses a computer in examinations (Impact Indicator 1).  Patrick has regular outpatient appointments for support with social skills, and feelings of social isolation (Impact Indicator 2). Patrick also has Sensory Processing Disorder which means that he finds the physical environment very challenging, being particularly sensitive to auditory stimuli (Impact Indicator 3).

ASD has had an impact on my education, in very particular ways.  Because my handwriting is both slow and at times illegible, this affected my school exam results and has also meant that I struggled to take notes in class.  I was able to use a computer in the Junior and Leaving Cert which helped me to get down everything that I needed to say in a way that teachers and the examiner could understand. My school attendance has not been great as I had to attend appointments with my psychiatrist during school hours, and there have been times when depression prevented me from leaving the house.  I think it has impacted on my overall experience of school, because I find social situations extremely challenging, making it difficult to fit in and to make friends, and this has made me feel very unhappy at times.  Some smells and sounds cause me distress, and this is a problem if there are large numbers of people.  This can affect my concentration in lessons.  I become overwhelmed and get very tired, meaning that sometimes homework is impossible to complete at the end of the school day.

Barbara was diagnosed with a Specific Learning Difficulty (Dyslexia) in primary school, affecting spelling and written expression to a significant degree (Impact Indicator 6).  Barbara’s psycho-educational assessment also indicates that her overall ability lies within the above average range, but this not reflected in her school results (Impact Indicator 4).  She has received regular learning support in post-primary school, for help with essay writing and study skills (Impact Indicator 1).

  1. I have always had help in school from the resource teacher to help me with organising information, and writing essays.  She taught me how to use mind maps to learn and remember material.

  2. My Dyslexia report says that I have a slow processing speed and working memory.  It takes me a long time to get my thoughts down in writing.  I just cannot keep up with taking notes in class, I just don’t write fast enough.

  3. In general, I don’t think that my performance in exams reflects my ability.  I know I’m not stupid but I just don’t get the marks.

  4. It takes my brain a long time to retrieve information, so I end up writing far less than everyone else, and running out of time before I have answered all of the questions.

  5. Having to study for so many subjects is hard for me, it takes such a long time to do homework.

Other examples are provided on page 14 of the DARE 2015 Application Guide.

These examples should help students to understand how the personal statement connects to communicating educational disadvantage.  It is so important that students take this opportunity to tell their story.

 

Getting started on transition planning 2: Secondary school to college or employment

After leaving school, young people need to discover and navigate new environments, and become familiar with a different set of social and institutional rules.  They also need to know how to disclose a difficulty or disability, manage daily living activities independently, and be confident in their social and self-advocacy skills, organization, and time management.  If these skills have not been acquired during the senior school years, personal circumstances can change from managing, to not managing, very quickly.  Students can become lost in the college or university system, or become anxious and lose confidence in an overwhelming work environment.

Moving into third level education

Leaving school means moving from a familiar and highly structured environment. This is difficult for most young people and can be especially difficult for some young people with additional needs, challenges or difficulties.  Being self-aware, discovering options, researching choices, gathering all of the information to make comparisons, and discussing advantages and disadvantages, are essential to enjoying the first year in college and to staying in college. Students need to be confident about strengths and challenges and how these fit with their chosen course.  Identifying support services, arranging for a needs assessment and disclosing special needs or disability is very important. Choosing not to disclose may lead to a delay in receiving human and technological support, and may make the first few weeks very difficult.

There is enormous pressure and significant value placed upon  ‘going to college’ or uni, and rarely is sufficient time or thought given over to the appropriateness of the setting or environment, relevance of the course to future aspirations, and availability of person-centred supports.  These issues can be complex and time consuming, and need to be investigated before the final year in school, which is inevitably taken up with intensive study and examinations.  Chapter 5 Planning Transitions for Young People with Special Needs and Disabilities looks at discovering options and making choices early in the senior cycle of education, and Chapter 8 – Managing the Transition Bridge – contains checklists and forms that can assist with managing the move from school to further / higher education or employment. For example, Transition Tasks for Students and Parents,  and College Offers Checklist.

chapter-8

Moving into employment

The shift from school to the workplace can be confusing and disorientating especially in the first few weeks.  At school everyone is completing the same work at the same time in the same way.  At work everyone has a particular job to do and it isn’t always easy to remember all of the steps and tasks that are assigned to your role.  A short induction or on-the-job teaching might take place, but often there is a lot of information to remember in a short space of time.  Young people need to be confident about asking for information to be provided in a format that they can re-visit and re-check.  Having a part-time job and getting some work experience are really useful actions for preparing for the move from school.  Knowing how and when to disclose a special need or disability is very important and needs to be discussed and practiced before a job interview and / or the first day at work.  Choosing not to disclose may lead to potentially losing a job, creating a lack of trust or uncertainty, or a delay in receiving human and technological supports.  Creating and practicing a disclosure script is incredibly useful, and a template for creating a disclosure script can be downloaded here.

disclosure

The Association for Higher Education Access and Disability (AHEAD) has an excellent guide to disclosure which you can download here and which includes a self-assessment of reasonable accommodation requirements.

You can find more job seeking tips from AHEAD at https://www.ahead.ie/graduate

 

finding-work

 

The National Autistic Society has also published an excellent interactive workbook on finding employment called Finding Work.

 

10 minutes with …..

cilllian-murphy

…… Cillian Murphy, Educational Psychologist with Student Support and Development in Dublin City University.

 

 

What does a Student Learning Officer do?

I work with undergraduate and postgraduate students at third level to help them build effective learning strategies and writing skills.

Why did you choose to work within Disability Services

I trained as an Educational Psychologist but wanted to do work based more on psycho-educational intervention than assessment. I did a placement in a disability service during my training and knew third level was the right setting for me. I began working after graduation in a Disability Service, but in my current role I now provide the same support to the whole student body, as many students have issues with learning effectively at third level, not just those with disabilities.

Where did you train and how long did it take?

I completed a four year Psychology degree in Trinity College Dublin, then worked for three years in the education sector gaining experience, before returning to college for a two year Masters in Educational Psychology in University College Dublin.

What qualities and skills does a Student Learning Officer need?

A Student Learning Officer needs to be empathetic to the difficulties students frequently face in tackling third level, they need to be calm, approachable and good at relating to students. They need to have the skill to pick out exactly where a student is having difficulties in their learning and know a range of tools, strategies and techniques to overcome these issues.

Have you always worked with young people? 

Yes! I’ve been volunteering with children and young people since my own days as a student and my entire career to date has been working with children and young people.

What kind of support do you provide?

I provide many workshops every week in different study and writing skills that students can drop into. The workshops cover areas such as critical writing, time management and effective reading amongst others. I also lead a small group programme called ‘Learning to Learn’, coordinate a Writing Centre for students to avail of writing support, and offer individual learning development sessions.

What do you like most about your job?

I love working with a small group of students over several weeks – it’s great to see people sharing their experiences and supporting each other and taking strides forward in their learning.

Are you working on any projects at the moment?

I’ve actually just launched an exciting technology project with our I.T. team. We’ve embedded the best learning apps and extensions on Google Chrome (for example mind mapping and flashcards apps) to all student Gmail accounts. This way all students at the institution have access to good quality learning technology, not just those who engage with Disability Services.

What is your top tip for students starting college?

Get organized! Read through module outlines, know when your assignments are due, how much their worth, the topic on the module. Create digital folders in Google Drive or Dropbox for all of your materials and stay on top of them right from Week 1.

How can parents help?

Parents can help by emphasizing how important routine is in learning – building a study routine almost like a real workplace routine can give students the structure they need to manage independent learning.

I’m on the wrong course, get me out of here!

Already?

I’ve just come back from visiting a young man  who has decided, at the end of Week 1,  that he simply cannot return to his course. Whilst for most students the disenchantment period might drag on for a little longer, there are implications for future choices and funding.

Recent reports estimate that up to 80% of students on some college courses in Ireland, are withdrawing from college within the first year, with a general withdrawal rate in first year of 1 in 6 students.   As I pointed out in an earlier post, national and international studies suggest that the principal reasons for dropping-out are:

1. Course choice: inaccurate understanding and awareness of course content in terms of modules, learning outcomes and the curriculum across all three or four years of study.
2. Personal factors: self-awareness, self-management, insufficient competence in study skills, a general lack of preparedness.
3. Financial burden: costs associated with attending college, including the need to seek part-time work, and late payment of student grants.
4. Medical and mental health difficulties: exacerbated by anxiety, self-esteem, a sense of ‘not fitting in’, social isolation, homesickness, and feeling overwhelmed.
5. Family influences.

There is a great deal of work to be done around items 1 and 2, an increasingly impossible task in the light of cuts to career guidance in secondary schools, as highlighted in Lest we forget: Lessons learned in Ireland following Budget 2012.

The seeds of self-awareness, self-determination, and self-advocacy, need to be sown, watered and nurtured by competent gardeners.  Exploring options and choices are physical activities that require the support and engagement of knowledgeable adults.  These things do not happen by chance, and using a transition planning tool such as MyUniPlan, can help to get the ball rolling.

Phew.  Rant over.

So IF you discover that you are on the wrong course, what is to be done?

  1. Transfer to another course within your college.
  2. Transfer to another college, university or Institute of Technology.
  3. Re-apply to the CAO to begin another course in the following year.

BUT it’s important to bear in mind the financial implications… 

In Ireland, students receive ‘free fees’ meaning they pay a ‘contribution’ towards their university education, currently c. €3,000.  The remaining fees (c. €3,000) are paid by the Higher Education Authority.  For this reason, changes you make to your registration status as a student, may incur a financial penalty.  A comprehensive explanation of how fees work for repeating a year in college can be found at Student Finance.

Bottom line: the HEA pays their share of fees in each of the years of your undergraduate degree.  If you withdraw after one year, you are deemed to have used up one year of your ‘free fees’ contribution from the HEA, so if you begin the year again in the same or another institution, you will be liable to pay the ‘student contribution’ PLUS the ‘HEA contribution’, in other words, about €6,000.   So you need to be sure about your decision, and the timing and method of transfer or withdrawal is crucial.

IMPORTANT: Although the HEA will not pay tuition fees if you have to repeat a year (for example, if you failed exams or decide to switch courses), they may do so if you can provide evidence of ‘exceptional circumstances’ such as a certified serious illness, for example, one that might have resulted in a period of hospitalization.  Very stringent regulations on this, check with your college or university.

Transfer to another course within your college.

Most colleges, universities, institutes of technology have explicit regulations about this, and, in general, you must follow the procedures to request a transfer  within the first three weeks of beginning college.  Check the rules in your college.

Transfer to another institution.

If you want to switch to the same or a similar course in another college, university or institute of technology, you must meet the subject entry requirements for the course either through your Leaving Certificate results, or from the study you have completed on your existing course.  You do not get extra points for having been in college already. Students apply to the CAO as usual by 1st February, although there is a special late closing date of 22 July.  Read the CAO handbook, and check the rules in your institution.

Re-apply to the CAO to begin another course in the following year.

In the usual way.  If you applied to DARE the year before and were eligible for a DARE place, you can ‘carry over’ this eligibility for one year.  You still need to follow some of the DARE application procedures through your CAO account.  Follow the instructions carefully.

myuniplan-avatar-journey

 

 

This can all be avoided with early, staged, person-centred transition planning.

 

10 minutes with ….

susan

 

…..  Susan Madigan, Occupational Therapist, Disability Service, Dublin City University.

 

1.    What does an Occupational Therapist do?

Occupational Therapists work with people in relation to their daily activities or “occupations”. We work with people who are not currently able to do the things that they want to do, or the things that they need to do. We work with people to build their own skills, but we also look at what can be changed in the physical and social environment, to enable people to be more independent. Occupational Therapists work in a variety of settings for example; with children in schools and clinics, teenagers and adults in mental health settings, and older people in hospitals and in trying to enable them to stay in their own homes.

2.    Why did you choose Occupational Therapy?

I was involved with lots of different voluntary work since my teenage years, even using most of my annual leave from my bank job to volunteer with different groups, including Barretstown. All of the volunteer work I did was involved with facilitating or enabling people to do the things they wanted to do. When I was looking for a change of career, there was only one job that appealed to me – variety, fun, working with people, and definitely not a typical desk job!

3.    Where did you train and how long did it take?

I completed the four-year undergraduate course in Trinity College, Dublin. There is a mix of academic work, practical projects, and work placement – 1000 hours over the four years. The Occupational Therapy course is tough, but very varied, so there’s always a new module or topic to get stuck into. Though financially it was a struggle, as I had already completed a degree, and so had to pay for my course, it was the best decision I have ever made. I will still be working and enjoying my work for years to come!

4.    What qualities and skills does an Occupational Therapist need?

OTs need to be great communicators, love working with people, and have a knack for creative problem solving – a big part of our job. For me, a very important quality is being non-judgemental. We don’t know who our next client will be, and it’s important for us to leave our biases at the door, and work with our clients to reach their goals.

5.    Have you always worked with young people?

Yes, I have always enjoyed working with young people since training the 1st year netball girls at school! I love working with young people, it’s so much fun, and really keeps me on my toes. I have been very fortunate to work with young people over the past 20 years as a cinnire at Irish college, an inner city tutor at college, and a Cara at Barretstown. As an Occupational Therapist, I worked for a year in a Child and Adolescent Mental Health Clinic, which was great as I got to work with small children right up to school leavers. As an Occupational Therapist in third level, I  have worked in Trinity College, Dublin Institute of Technology, now DCU.

6.    What kind of support do you provide to college students?

My main role is to support students to participate in everyday activities that are important to them. We generally support students to make changes in their academic habits, communication, time use and well-being areas. I do this by facilitating students to identify changes they would like to make in their daily life, coach them through reaching their goals, work together to develop their skills, and reflect on the positive outcomes. An important aspect of Occupational Therapy is that we encourage the development of a person’s own strategies and skills, to enable them to manage life’s ups and downs after college. The Occupational Therapy process is very practical and functional, and focused on getting things done now and in the future. It is about doing!

7.    What do you like most about your job?

I enjoy the variety of working with a diverse group of clients especially at third level. We have school leavers up to retirees, international students, and work with people managing physical, neurological and mental health conditions. I like meeting with new clients and introducing them to the ideas of Occupational Therapy, and the best thing is seeing students graduate with their well-earned degrees after working together over a number of years.

8.    Are you working on any projects at the moment?

We are always working on lots of projects 🙂 One that we are quite excited about is a programme we piloted in the summer, to support people repeating exams. It is an intensive week of interactive workshops and structured study sessions. We are now going to roll it out for the annual Christmas and Summer exams, and is especially useful for students with exam anxiety or those who have difficulty performing well in exams for any reason.

9.    What is your top tip for students starting college?

Pick the right course! Get some advice from people you trust, and be happy with your choice. Take some time out before college if you need to, this is an important decision. Once at college ask for help if you need it. There are lots of resources to help people settle in.

10.  How can parents help?

Parents can really help by supporting their young person to choose a course that will suit them. Of course you should pick the course you are interested in, but not all courses are created equally. Some courses are extremely academic, with little group work or interaction. Some are highly practical and focus more on building functional skills, rather than academic learning. Arts in NUIG may look very different to Arts in DIT. What will suit you best? Encourage your child to do something they are interested in, remember, they have to study it for 3-4 years (not you) and doing something they dislike because “there’s a job in it” does not make for a successful student.

 

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10 minutes with ….

Andrew
……. Andrew Costello, Assistive Technology Officer,  Disability Service, Trinity College Dublin.

 

 

1.       What does an Assistive Technologist do?

An Assistive Technologist, or AT for short, supports students in the use of  technology as “scaffolding” to enable independent learning, and to overcome barriers to learning.

2.    Why did you choose to work in this area?

I really get a kick out of helping users to see technology as an aid in their daily lives, and not something they are afraid to use.

3.     Where did you train and how long did it take?

Well,  I completed a BA in Information Technology and Management, and recently graduated with an MSc in Assistive Technology and Universal Design from DIT in Kevin Street.  All in all, I’ve been working specifically on assistive technologies for the last 8 years (feeling old now !!).

4.     What qualities and skills are required for your role?

Being a good listener and communicator.  The role involves matching technology to different users with all types of skills and abilities. I feel a key component is allowing the student to bring those abilities to the forefront through their use of technology.

5.     Have you always worked with young people?

No, my first role was working on web-based data analytics for hotel satisfactions cards, the technology that allows hotels to rate how they are preforming against other hotel brands.

6.     What kind of support do you provide to college students?

When it comes to technology pretty much anything that can be plugged in!! Typically, note taking supports, academic text-to-speech tools, and more 1:1 tools such as screen reading and magnification software.

7.     What do you like most about your job?

The buzz of seeing a 1st year student progressing through college to graduation, and the change in personality and confidence that academic life can bring.

8.     Are you working on any projects at the moment?

I am presently working on the Trinity Inclusive Curriculum (TIC) which aims to form a key part of the Trinity Education Project looking at curriculum re-design, and ensuring that inclusive practices are built-in from the ground up.

9.     What is your top tip for students starting college?

Try to get a plan in place for all of the things that you want to achieve in a week, like study, lecture, sports and of course socialising. Try not to let them get on top of each other, and set clear – and achievable! – goals for the week.

10.  How can parents help?

Try to keep a healthy communication route open with your young person, read up on the course handbook so you have an idea of the workload and how much pressure they might be under throughout the year.  Also make sure you are aware of all the supports available to students at 2nd and 3rd level, so that you don’t feel isolated if problems arise.

For more information on how AT can help in college, visit Andrew’s Assitive Technology page.