where you can find answers and understand more about what autism is, and what it means for your child

I have been looking into training both for us, and the school, as we want to understand more about autism and the thing we need to consider.

I also want to be able to let the school know what training they can go on, in the hope that they will consider going so that they can understand how to support my son and successfully address the challenging behaviour they have been experiencing.

So here is what I have found.

Parents/ Carers

EarlyBird/ EarlyBird Plus 
Support programmes for parents and carers, offering advice and guidance on strategies and approaches for dealing with young autistic children

Autism Berkshire Training
Training for people on the autism spectrum, parents, carers and professionals working with people with autism, promoting understanding of autism and issues associated with autism.
The courses include an introduction to autism spectrum conditions, advice for parents and carers, and life skills for autistic adults

National Autistic Society Training Courses
A range of training courses, including online training.

Training includes:

There are also a range of downloadable resources available on the NAS website www.autism.org.uk 


Buckinghamshire Learning trust
The core moral purpose of the Trust is to increase the number of schools and settings giving good and better provision to children and young people and to reduce the number of schools and settings falling into Ofsted categories.
One of their courses is Autism in The Early Years - details can be found by clicking here 

They also have half day courses on understanding autism spectrum conditions, like the one introduction to autism one listed here.

Inclusion Development Programme 
Part of the government’s strategy to improve outcomes for children with special educational needs
and was first outlined in Removing Barriers to Achievement information 

They have an online course for supporting children on the autism spectrum in the Early Years

These include Inclusion Development Programme a free interactive resource for headteachers, leadership teams, teachers, teaching assistants and trainee teachers.

National Autistic Society
There are a number of resources for Educational Professionals available on the NAS website.

This includes a 2 day TEACH programme which aims to develop your understanding of how to support people on the autism spectrum using the TEACCH programme.

Autism Education Trust (AET)
The purpose of the Autism Education Trust (AET) is to improve the education of children and young people with autism, and has a range of training resources, all of which are accessible from their home page.

There are a number of training hubs which offer nationally delivered face-to-face training for professionals

They also have a range of online resources including a schools autism competency framework has been developed by the Autism Centre for Education and Research (ACER) at the University of Birmingham in collaboration with consultants with expertise in autism.

autism education health and care plan assessment

With less than 4 weeks before the LA make their decision on whether or not to carry out an assessment, I have been trying to get a sense of what will be involved and what we can do to ensure get a yes.

With the decision looming, I seem to be permanently on edge and my main focus is on trying to find any piece of information which we can use to help us get ready.

What is an EHCP

The EHCP was introduced in September 2014 and there are next to no stories from parents who have been through it - so we are unable able to get any insights beyond the general guidelines explaining the process.

This means we don't really know what to expect, what rookie mistakes to avoid, or how much evidence the LA needs in order to think that we can't be supported by the resources already available within the school.

I don't really know what I should be doing, and this is so frustrating.

Based on our current situation, I can't help but think that this is our key chance to get help and that the decision made will have a HUGE impact on our lives and our Son's chances of success within school.

I have never let my schooling interfere with my education.
--- Mark Twain

I am sure that there will be other options, but for now we are fully focused on doing what we can to have the best possible chance now.

So, what is the Process

The EHC needs assessment will take up to 16 weeks, will require numerous assessments from different professionals and if a plan is granted this will be completed within 20 weeks. 

After this, the plan will be into place within 2 months. A decision not to carry out the assessment, or create a plan can be appealed.  

Useful resources

Both the IPSEA EHC Needs Assessment Overview and the NAS EHC Needs Assessment Overview provide an overview of the process, from making a request to appealing a decision if necessary.

I found the NAS overview has some useful resources, including a template letter which can be used to make the initial request to the LA and a toolkit which can be used to gather the views of your child

We also got a booklet from the LA in the response acknowledging our request for a needs assessment. This  explained the process, names of people who will be in contact to explain the process (still waiting to hear from them) and the details of a local organisation (FACT Bucks) who work with the council to represent views and help share future provision and policies.

A little more information to add to our fact files!

Rounding up the troops

I don't think there is a professional body or charity that I have not tried to get hold of over the past few weeks, in the hope of trying to find some help.

I have tried to get the ball rolling by reaching out to an Educational Psychologist, Occupational therapist and Speech and Language therapist, who all accept self-referrals, and have asked them to assess our Son and hopefully provide treatment. 

I am not sure if this will help or hinder us, but at least I feel like I am doing something, rather than waiting for things to happen whilst my Son continues to struggle.

We also have appointments over the next week with someone from the SEND IAS team, and someone from the Leonard Cheshire Disability team which we found through the Bank Workers Charity (supports current/ former banking workers) who are able to offer advice and support through next few months.

Fingers crossed, some of them can provide us with some of the insights we are looking for!

Have you been through the EHC assessment process? Was there any organisation or resources that helped you through the process? Would be great from others what support they were able to get ...

autism school informal exclusion, equality act

This week I am a little less fearful about my Son's future at school as we have found out a few more facts, and we are starting to feel like the odds winning the game of "Find Help Before Our Son is Excluded" a.k.a "The Gameare a little more in our favour.

Fear comes from not knowing what to expect and not feeling you have any control over what's about to happen. When you feel helpless, you're far more afraid than you would be if you knew the facts.

-- Chris Hadfield (Astronaut)

We now know that since ASD and ADHD is a recognised disability schools are bound by legislation when dealing with behaviour linked to this disability. In addition we have identified people/ organisations who can join us in meetings with the school, and guide us through the EHC assessment process.

This knowledge has given us increased confidence to discuss options with our Son's school, and the disorientating feeling of not knowing where to turn or what to do is starting to fade.

The Legislation

Informal Exclusions are unlawful in mainstream schools
In mainstream schools informal or unofficial exclusions are unlawful, regardless of whether they occur with the agreement of the parents.

Unfortunately independent schools are not required to comply with exclusions legislation and guidance, however an informal exclusion may be challenged if informal exclusions are not contained as a Sanction in their Behaviour policy.

Equality Act 2010
All schools are bound by the Equality Act 2010 which states that schools have a duty to make reasonable adjustments to both to their policies and practices when dealing with behaviour attributable to a disability.

This includes providing auxiliary aids and services, including additional support or assistance for a disabled pupil.

So what is classed as reasonable?

This seems to be a subjective judgement based on the associated costs and resources available to the school, which makes it tricky to know what  exactly what would / wouldn't be considered as a reasonable adjustment if we don't get an EHC plan.

That said it does seem, based on the advised received to date, that the school may be required to provide some support for our Son, even if we don't get the EHC funding.

Hopefully one day this legislation will go further, and it will be easier to access support for children in school, even in private schools, which would mean a lot less stress for the family and the child.

Getting Advice and Support

National Autistic Society
I have read almost every word on the NAS Website website including their guide Asperger syndrome: a school's guide, which is a great source of information.  

We received invaluable advice during a phone appointment with the NAS School Exclusions Service, which they followed up with an email containing a customised 20 page report detailing the points discussed on the call.

This report was an amazing source of information - outlining our legal rights, advising of potential training courses and providing contact details for organisations who can offer support, including those that can offer free legal support for challenging exclusions.

Send IAS
The other great source of support was from Bucks SEND IAS who also advised us of the legislation and our rights, and are able to provide independent advice and support during discussions with the school. They also offer support for the EHC process.

Looking ahead

While the thought of a legal challenge is very unappealing, it is good to know our rights and where we can turn to should we find ourself in a situation where we forced to fight an informal or permanent exclusion.

Have you had to deal with temporary or permanent exclusion? If so, were you able to get support in challenging the exclusion and getting the school to change their stance?
The frustration of facing possible exclusion from school and feeling powerless to stop it

Battles are not new to me. Each time I have faced obstacles I found a way to get through it.  Those battles seem like nothing when compared to this week which has felt like a full on war. A war against uncertainty, a war against “the system” and a war against time.

School has implemented an informal an "informal exclusion" process

Our son's school have implemented an "informal exclusion" process which means we will need to collect him on "bad days", and they will review whether the school is the right place for him if things don't improve. 

The teacher is struggling with his behaviour and it is causing issues for the other boys in his class.

It is difficult to hear the reported behaviour. Frequent throwing of toys at other children, lying on the floor howling, biting, destroying other boys’ work and kicking the teaching staff. 

This doesn't sound like the son I know, we don’t see this at home. There must being something in the school environment which is triggering this behaviour, and so that is where he needs help and support.  

School say that they can't provide support

The school say that there is little they can do to provide additional support due to a lack of teaching resources. 

They are reluctant to consider training which they feel would just be a “sticking plaster” since they are not experts in behavioural issues. 

Their suggestion was for us to pay for dedicated one-to-one support in the classroom. Not an option for us since I forgot to buy a lottery ticket the week our numbers came up.

It doesn't seem right, but Independent Schools are not bound by the same policies as mainstream schools and don’t have the same obligations in terms of supporting special needs and putting in reasonable measures to avoid exclusion. In addition we are told that within a private school setting is is harder to access to the same services which can be provided in mainstream schools. 

And now all our local mainstream schools have no places to take him - so we can't move him.

It feels like our Son is paying a high price because we decided a year ago to put him in an independent school where we thought he would benefit from smaller classes and would have more opportunity to experience extra curricular sports such as swimming. 

In trying to do what we thought was the best for our son, we seem to have put him at a disadvantage. 

We need to apply for special funding through an EHCP

Our hope is to apply for funding from our Local Authority and request an Educational Health Care  (EHC) plan, but we have been told that they are less willing to provide this to children in private schools. 

We have sent off our request to the Buckinghamshire SEN team, and have 6 weeks for them to respond on whether they will do an assessment. If they agree, it will then take at least 20 weeks before the assessments are completed and a decision on funding is made.

The problem is we can’t wait 20 weeks.

Trying to find help before exclusion

We are now playing a game of “Find Help Before Our Son is Excluded” – a cross between a treasure hunt, Snakes & Ladders and Don’t Panic. Not the snappiest of names, but it is a game the keeps you on the edge of your seat.

The rules of the game:
  • Hunt on the internet for anything to do with autism, Aspergers and ADHD - trying to find out about available therapy, training courses (for us/ him / the school), helplines and other advisory services
  • Follow up with phone calls/ emails/ letters to try find people to discuss your situation with, and identify some advice and guidance on things that might be worth considering 
  • For every successful call and piece of advice obtained, you get to advance forward however there are also the setbacks as you are passed from pillar to post or a promising option turns out to be a no-go either because the information is outdated, you don’t fit the criteria for consideration or they don’t quite know what to do as your situation is “slightly different to the norm” 
  • The game is won when you get help for your son, and lost if the school permanently excludes your Son and you are forced into a school far from home as none of the schools in your area have any space in their reception classes

So far we have contacted a child psychiatrist, educational psychologist, occupational therapist, Pupil Referral Unit, the Buckinghamshire Schools Admission Team, two local mainstream schools, an ASD Early Bird Training Programme, three support charities and two helplines. 

And we are still trying to getting help within the school.

And so the game goes on, and we continue to wage the war.
asd autism

This week we were told that my 5 year old son likely has high functioning Autism Syndrome Disorder /Aspergers and ADHD.

For the past 2 years we have been regularly called in first by his nursery and then by his new school to talk about his behaviour which seems to get worse as the class size gets bigger. During this time we have struggled to understand the behaviour being described, as we rarely see the same behaviour at home.

We escaped the terrible twos, didn’t get much sibling jealousy when our daughter was born 2 years ago and apart from being a little “in his own world” we never really had much of an issue with other kids when on playdates or at the local soft play centre. So why at the age of 3 and a half did he start causing issues for his teachers and classmates? 

Now we know.

I have to admit that as I sat listening to the specialist explain what Aspergers I was filled with feelings of guilt, sadness and relief – and barely paid attention as she went on to explain that it was a neurological disorder and that what is currently a weakness can also become a strength.

Guilty about not having sought help earlier, for being a working mum who isn’t always around to support him and for wishing we didn’t all have this mountain to climb.

Sad for the loss of a life that I had dreamed for my son – a life where he would flourish at school, be surrounded by friends and grow up feeling happy & secure – and sad to think that he is more likely to be misunderstood, encounter bullying and face challenges at school and in later years.

Relieved to know that there was underlying reason to why he had been behaving the way he has, why sometimes I find parenting incredibly hard and somewhat overwhelming, and relieved to know that there is a way through it. We just need to find the right support to help him and encourage him, and help him make sense of the world around him.

I am only just starting to learn about Aspergers and ADHD and all that we need to consider for my son and our family, but I still have so many questions.

  • What do we do now, and how do we help our son? 
  • How do you teach some of the finer points of life such as empathy, remorse and making sense of social cues to someone who struggles with this? 
  • What support is out there to help him and us? 
  • Do I have the patience and strength to be the parent that he needs me to be 
  • Will we be able to find a way to ensure he has the best chance of fulfilling his potential 
  • What do we tell the school, and how do we work with them to help him 
  • Do we ask the school to educate the other children in his class about why he acts differently? 
  • Do we need to change our life style and work commitments to ensure we are at home more, and if so what would be the best option for us all 
  • How do we raise awareness so people understand our son's behaviour and that sometimes he needs help rather than discipline, and don't just write him off as the naughty kid

I have started this blog to help me to document our journey as we start to answer these questions and undercover new ones, so we remember what we learn.

If anyone else reads this, then hopefully it will allow us to connect with those who have made this journey before us so we may learn from them, and provide some insight to those who find themselves on this journey after us. 

How did you feel and what questions did you have when you were first told that your child may have autism, and how has this changed over time?
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