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Advocacy

May 27, 2017

I am a massive advocate for people with autism and am a parent of a young man on the spectrum.  I am also a huge supporter of the National Autistic Society and its current campaigns to raise understanding of what it is like to be autistic with some fantastic videos that have been viewed millions of times.  It is truly wonderful that this minority in society is finally getting the attention that it deserves.

 

Of course, there is going to be a 'but'.

 

First, though, let me share with you a set of characteristics that we found on an information sheet:

 

WHAT TO LOOK FOR:

 

Often loners.

Limited Social Skills

Extremes of emotions, highly excitable at times and evidence of mood swings

Lack of awareness of potential danger

Sensitive to external stimulation

May have phobias

Obsessive or immature behaviour

Often have poor exercise tolerance

Problems with awareness of time and sequencing

Poorly developed ability to plan e.g. essays

Writing difficulties

Poor short term visual and verbal memory - copying from the board, dictation , following instructions

Confusion over laterality

Poor posture, body awareness, and awkward movements

Difficulties with physical activities, ball skills, running, and working as a team.

 

These are characteristics of children with dyspraxia.  I feel sure that parents of children who have been diagnosed with Autistic Spectrum Condition will relate to many of them.

 

Here is the 'but'.  There is a danger with autism advocacy.  The danger is that too much emphasis is put on a group of people who happen to fit within a particular set of diagnostic criteria, at the expense of others who have similar challenges but fit within a different set of criteria. Often we hear about young people who have a myriad of diagnoses, and the main difficulties that they face arise from that combination.

 

Let's look at some numbers found from a quick (and non scientific) search of the internet.

 

Dyspraxia - 5%

Dyslexia - 5 - 10%

ASC - 1%

ADHD - 3.62% (0.89% for girls)

 

These are all neurological conditions that are diagnosable.  They lead to differences in perception, behaviour, and learning.  If society is going to learn to be more tolerant of 'difference' it needs to do so for all.

 

Wearing an 'autism advocate' badge is an important step towards tolerance.  But as you do so, remember that you should also be wearing 5 'dyspraxia advocate' badges, 5-10 'dyslexia advocate' badges, and 3 'ADHD advocate' badges.  Plus a myriad of other conditions, and I offer due apologies for not including them in this blog.

 

PALS Society aims to be inclusive of all young persons who have alternative learning styles. And if we are to be tolerant of the learning style, we also have to be tolerant of the behaviours that arise from their condition, or that arise from having spent a long period of time in a society that hasn't been tolerant of them as a person.  

 

For those who like numbers, below we explore some government statistics that relate to PALS.  For those who don't, stop reading now and become an advocate of tolerance to all.

 

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A good starting point for understanding People with Alternative Learning Styles (PALS) is the Special Education Needs (SEN) register in schools as even the most gifted of PALS will have different learning and educational requirements.

 

Official government statistics show that 14.4% of pupils are on the SEN register.

 

My apologies to those who don't like numbers, at the bottom of this post is a table published by the Department for Education

(weblink:  https://www.gov.uk/government/statistics/special-educational-needs-in-england-january-2016)

 

 

As a bit of background to the table.  SEN support is the lower tier of support provided by schools who don't get any specific additional funding for children at this level - they get a flat level that is spread thinly for all and often is spent on Teaching Assistants who do a fantastic job.  A Statement or EHC (Education Health and Care) plan is a higher tier and includes additional funding for a mainstream school or a place in a Special School. Those who have gone through the process of getting an EHCP will know that this can take over a year, involves masses of paperwork and assessments, and parents are often discouraged from even applying.

 

The table has a row for Autistic Spectrum Disorder, but not for Dyspraxia nor Dyslexia, nor ADHD despite being more prevalent.  These are presumably captured in the 'Specific Learning Difficulty' category.

 

The row for ASD refers to children with a diagnosis.  Given that the average time from referral to diagnosis is 2 years, the actual numbers must be higher.  Such pupils are presumably listed in the 'Moderate Learning Difficulty SEN Support' numbers.

 

Being from the School Census, the data do not include children who are in private schools nor those who are home educated.

 

From the numbers in the table:

 

1) The total in 2016 is over 1 million children. That's a lot of difference.  It's about one in seven pupils.

2) The highest group in the Statement or EHC plan tier is ASD at 25.9%.  This is an indication of need and a response to the efforts of parents, advocates, schools, councils, Educational Psychologists ...

3) However, there are three times as many children in this category who don't have a diagnosis of ASD.

4) Social , Emotional and Mental Health is alarmingly high (almost 200,000 children)

5) Within a single group, for example Moderate Learning Difficulty, there seems to be a wide range of response.  Within this group who, according to the label have a similar level of difficulty, 26.8% receive SEN support and 13.4% have got an EHC plan.  One can only assume that there are a lot of children in this category are not getting the provision that they deserve.

6) The numbers in this table all add up to 100%.  There is no data on children with multiple diagnoses, or the (reportedly large) numbers of children on the Autistic spectrum who have social emotional and mental health problems whilst in school.

 

 

 

 

 

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