Needs not labels in autism

Definitions or labels within autism are no longer useful. What do high functioning or low functioning actually mean? If they were vague labels before, now they are almost meaningless.

When my older boys were diagnosed 17 years ago, they were non verbal, they had no eye contact, they had screaming tantrums and no form of communication. Their diagnosis was autism. Childhood autism. The term for children diagnosed by the age of three. Severe autism.

After a few years of  ABA (Applied Behavior analysis) and a lot of patient and intense parenting, they began to speak and to communicate.  They were able to learn when skills were broken down into tiny stages which is how we used ABA to teach them. We didn’t sit them at a desk and drill them, we just broke down everyday actions and everyday language into tiny manageable steps. We realised they could learn with the right support and they then became ‘high functioning’ which basically meant that they had average or higher than average IQs. This appeared to mean that they did not have learning difficulties.

Learning difficulties are in many children a part of their autism and not a separate diagnosis. My boys on testing fit into a category of having high IQs but in reality they are unable to follow fairly basic instructions like cooking recipes.

As a very basic definition, back when they were younger, ‘high functioning’ autism was the label that fitted them the best in comparison to ‘low functioning’. Not a pleasant sounding term but the only one that existed to try to categorise those children with ‘severe’ autism.  No child should be thought of as a label but these categories enabled parents to better fight for the education and support their children needed.

HIgh functioning is no longer an appropriate label for my boys. It is now being used for those with what used to be called Aspergers. Now that autism has been rolled up into one all encompassing diagnosis, there aren’t enough definitions to go round. Do I call my boys high functioning with severe language disorder perhaps? That still doesn’t define their needs.

Severe autism is no longer a useful label either. What does severe mean? To the parent of  a child who cannot be left alone for a moment, who self harms, who needs help to get washed and dressed, who has no method of communicaton except tantrums, severe may be the only word they can use.  To the adult or teenager with a late diagnosis who has severe anxiety and may be suicidal, severe may also be applicable. They cannot function either and are also in danger to their lives, but in a very different way.

Perhaps we should stop defining autism by labels.

We should perhaps identify needs.  Rather like when completing a PIP form or DLA form, we need to actually spell out every need our child has. That was also the aim of the EHCP (Education, Health Care Plan), to identify needs and try to fulfil them. What use is a label if you don’t get the education or support you need?

With language testing, percentages can be assessed and may be useful. If I say that one of my sons on testing scored 97 percentile non verbally on tests but 3 percentile verbally does that help you understand better what his needs might be? He has what is known as a ‘spiky profile’. While I don’t personally like labels, at times, this little nugget of information is something I can roll out to people to aid their understanding of him.

I also try to explain how this works for him. If I were to go to live in China tomorrow, I would not be able to communicate verbally, to answer the telephone, read a book, watch a film, even order food in a restaurant or ask where the bus stop is. But…that does not alter my intelligence. I am still the same person I am in the UK but one stripped of communication. That is how I imagine it feels for him at times. I cannot say that 100%, I am not my son. No one is my son. Everyone with autism is an individual. No one can speak categorically for another but some of those, like us parents who have lived with our children for every day and hour of their lives, come the closest to understanding our own children.  This is the best definition I can come up with.

There are no labels or diagnosis that fit our children and young people any more.

But there are many needs.

– Photo of Thomas being supported to pin his race number on, get his shoes tied tightly, time his warm up, be reminded to drink water. Support so that he can fulfil his desire to run. So many needs which are not obvious to those who do not know him well.



Carers go free – holiday ideas

It’s pouring with rain. It doesn’t feel like June at all. But the ‘summer’ holidays will soon be upon us.

It’s hard to keep children entertained all summer. I know they say that it’s good for children to be bored as it makes them think creatively about what to do with their time.  But, personally, I think one of the reasons my boys have improved so much is that we expose them continually to new ideas and activities, different experiences.  Of course, we still visit lots of tried and tested favourite places as we do like routine!

Firstly and most importantly. Admission charges.

Many places will offer discounts to children with special needs. In our picnic backpack, we carry copies of the boys’ EHCPs – the pages with their names on and most importantly, the page stating their disability. You need to prove that your child has autism. We also have letters from our GP stating that they need a carer with them. PIP awards or DLA are also good documentation to show. Finally, our borough supplies photo cards via social services. In London, if you qualify for free travel with a Freedom Pass, this also works as photo ID.

I learnt the hard way in the early days when I did not realise we could get discounted entrance. I remember taking the boys to the London Acquarium. The twins were nearly four and Hector, was just one and at that stage had not regressed into autism. He loved it and was happily pointing at fish and shrieking with delight. The twins meanwhile were freaked by the underground darkness. Sensory overload kicked in, they lay on the floor in meltdown and we only managed to stay half an hour in total. A very expensive outing.

So I don’t feel bad about getting discounts. Often our children do not get full use of their entrance ticket price.

CEA cards cost a £6 admin fee and entitle the holder to a free carer ticket every time they go to the cinema.  Some cinemas offer autism friendly screenings where the lights are not turned down so low and no one minds if your child is unable to sit quietly in their seat. We are all in it together at those screenings. We did those for many years as practice until finally , the boys could tolerate sitting for the duration of a film. They have always loved going to the cinema.

ZSL London and Whipsnade zoos offer free entry to a carer with any child who is  disabled. We have annual passes as it works out much more economical over a year. At Whipsnade, there is also a steam train ride (much loved) for which you can get discounted tickets too.

Merlin passes cover a range of theme parks and attractions . If you buy an annual pass, you can get a free carer pass to go with it. Each park seems to have a different system for those with autism to try and prevent them standing in long queues waiting to go on a ride. Ask at the guest services. One year, I met a family who also had a son with autism waiting at the exit of the train ride in Legoland and we have been friends since.

Carers do not have to be named or the same ones to accompany your child. With the zoo and merlin passes, the child’s photo is on them and so whoever accompanies that child can be the carer who goes free.

A few theatres offer relaxed performances for those with autism and other disabilities but these don’t happen very often so you need to keep an eye out for them. The NAS have a list of upcoming relaxed shows on their website.  The Proms now do a special needs prom each year for example. They may also send out a social story beforehand and on the day, there are staff more than happy to help with assistance. And of course, there is no one tutting at you if your child makes a noise or needs to come and go out of their seat.

We have also found that some theatres will offer access discounted tickets for those with disabilities and their carers. They don’t always advertise this so we always phone up and ask before booking any tickets.

Soft play centres and trampoline parks usually offer a discount and often a carer for free too. You do tend to need a carer able to stay and jump with your child as they can be quite busy places and injuries can happen due to other children being boisterous.

Last year, we finally took the plunge and took the boys to Disneyland Paris. It’s very expensive but, fortunately , we got free carer passes. We did need doctor’s letters as DLA, PIP and EHCPs aren’t sufficient evidence in France.  We got passes so that we didn’t have to queue for any rides and could almost get straight on. Warning. The queue to not queue was pretty horrendous. That makes it a stressful start before you even get in the park. Once you are in though, the staff are great and it is magical.

If you don’t want to spend money there are usually  free events over the summer.  I tend to search online to see what is on in our area. Lots of summer fetes . Art galleries and musuems are usually free and you can pop in and out of those. Some have children’s activities at weekends. I once challenged a carer to take the boys into central London and not spend anything. They managed to have a great day out as there so many free places to visit.

The boys at the Natural History Museum (free entrance)




Why BTECs suit some young people when GCSEs and A levels may not.

Our education system (in the UK) rarely accommodates the needs of children with autism well.  There are not enough specialist schools and not enough support within the mainstream system for children to succeed.

At primary age (4 – 11), parents may be able to choose whether to send their children to mainstream schools ideally with properly trained support in the form of LSAs (learning support assistants) or ABA (applied behaviour analysis) one to one tutors (which all my four boys had throughout the duration of mainstream primary school) or to special needs schools.

But what to choose at secondary level? We decided against mainstream. The academic system is mostly based around the acquisition of GCSEs. Our older boys would not be able to pass GCSEs, mainly because of their severe language disorder so what would they get out of mainstream secondary? Their needs would not be differentiated enough to provide them with any acknowledgement of the abilities they did possess which are not always about academic prowess.

Their very small special needs school offered foundation level Maths and English for those who would never attain a GCSE in those subjects. Starting at Level 1 and progressing to level 2 which is equivalent to a C grade at GCSE.  The questions are much more practical for our children. Why try to read Dickens when you have never read a book? Writing applications letters for jobs and interpreting articles about current affairs are so much more useful to boys like ours.

They also studied BTECs (Business and Technology Education Council) practical based, vocational qualifications. Again, so much more relevant to everyday life and teaching skills for possible future work.

I found it difficult to grasp what the levels meant at first. They range from 1 – 7. The most well known and taught are levels 2 and 3.

Level 2 BTECs are the basis of qualifications taken at age 16. The diploma is a full time course and equivalent to 4 GCSEs. The extended certificate is equivalent to 3 GCSEs. A certificate is 2 and an award is 1. So there is a good range of level within Level 2 to choose from and an equally good range of subjects to select from too.

Many are vocational based eg hairdressing or childcare. They equip a young person with the skills to find meaningful work. They are certainly not a qualification just for special needs young people but for anyone who is not very academically inclined. They are mostly course based so they are constantly assessed without the need for a final big exam at the end although there is usually a final major project to complete which can take many months. This eliminates exam stress and trying to remember a year or even two years’ worth of information in one go. It also provides a portfolio to showcase what has been achieved.

Level 3 is equivalent to A levels. Again, there are different levels to choose from, ranging from a course which is equivalent to 3 full A levels or to a single one.  The gradings are a pass which is equal to an E grade at A level, merit equal to a C grade and distinction which is equal to an A grade.

In 2015. 26% of students accepted onto a university course held at least one BTEC at level 3 according to UCAS.

To illustrate my point about BTECs.  Thomas has one GCSE in Art. But, he is now completing Level 2 in Art and Design this summer and heading towards Level 3 in September which will take two full years.

Benjamin is just finishing his first year of Level 3 Music Performance and Technology . By this time next year, he will have a qualification equivalent to 3 A levels yet has just one GCSE in Maths.

Hector is studying two different BTECS in sixth form. Art and Media. He is also studying A level photography so there is a mix and match approach depending on skills and ability.

There is still a written component to these courses which all my boys struggle with. The twins at college have one to one support from the Ambitious about Autism college which they jointly attend alongside mainstream college. They require help with research and essay writing but not with the practical elements. They accept they need that level of support but how great for their self esteem that they can do courses at a high level and manage all the practical skills unaided.

Because of the availability of BTECs, all our boys have a very real hope of maybe one day being able to work in the fields in which they excel. If they had been through a mainstream system with only GCSEs to choose from, they would have finished their education as ‘failers’ in many ways, having ‘failed’ to achieve any qualifications or attain any vocational skills.

We need more children to leave school with actual, real life skills which can lead to meaningful work.

The biggest bonus for all our boys is that they enjoy learning and are loving the courses they are doing. They try so hard in everything they do and really want to prove to themselves that they can succeed. They are engaged in courses which stretch them and make use of their innate abilities. Having autism with a language disorder should not exclude them from attainment and BTECs ensure this for them.