Are there types of Autism?

I am constantly approached by others who want to put me in touch with a friend, a neighbour, a colleague who knows someone who has just got a diagnosis of autism.

I think everyone who doesn’t really understand autism thinks it is just one diagnosis, one condition. The expression comes to mind ‘when you have met one child with autism, you have met one child with autism’. Every child is different and every diagnosis is different and therein lies a huge problem for us all.

Yes, there are some aspects that your child or any child may share but no one has the exact same list of differences or difficulties. Your child may be deemed ‘high functioning’ but what does that mean? That they have spoken language they are able to use? That they have a high IQ level? That they can manage their behaviour while out in public? ‘Low functioning’ has an awful sound to it, a child may be labelled in this way because they can’t talk and have challenging behaviours but who are we to really know how functioning they are? Not having language will automatically bring an IQ score right down low but their non verbal intelligence may be very high. So let’s dispense with these titles.

Asperger’s syndrome is no longer a separate diagnosis which does make it harder for those of us whose children have what was previously known as classic autism. I am forever explaining to people that my boys were diagnosed when they were non verbal and had no language and we didn’t know if they would ever learn to talk. To me, it seems like a totally different diagnosis to Asperger’s where a child has normal acquistion of language but the two are both now combined to be known as ASD – autistic spectrum disorder.

That’s the problem – spectrum, it’s a huge one and meant to cover a huge range of abilities and differences. So when I am asked to speak to a parent whose 15 year old has just been diagnosed, I say no, I can’t help, I know nothing of a child with a late diagnosis which will usually mean a diagnosis of what was known as Asperger’s . Send me a parent with a non verbal 3 year old who stims and I am your woman, I can help or at least direct them towards help.

There are also children with serious medical problems which accompany their autism, mainly epilepsy which affects around 1 in every 5 of the children with more severe autism but also gut issues which also affect an unknown number of children. In these children, medical intervention to heal their stomachs can sometimes reduce the severity of their autism.

Then there seem to be other sub categories such as whether a child has learning difficulties which a high number do have. Is this in addition to their autism or because of it? Does anyone actually know? You can then add a number of co existing conditions into the melting pot such as ADHD, dyspraxia, hypomobility.

Which means that a diagnosis of autism means what precisely? I hope one day that autism may be sub categorized in the way that say visual problems are. A child may be blind or may have a squint or may just require glasses, we can understand what the child’s needs may be according to these labels but we can’t begin to understand what a child’s needs are by just the one word Autism.

My four boys all have a similar ‘type’ of autism if categories existed, they all started with a diagnosis at a young age when they were non verbal and had no eye contact ie severe classic autism but none of them have additional learning difficulties and all of them have learned to talk plus they are all very social. But they are all different from each other and have very different issues despite their similarities.

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Resentment

I’m sure we all have days or even weeks where we feel resentful. What are we really resentful about though? To whom is it directed?

I am going through a period where I would say I feel resentful and it’s really not a very nice emotion although perhaps it’s not as bad as envy. It’s hard to define what causes it and to whom it is directed.

On a really bad day, it’s almost a ‘why me?’ ‘why are all of my children autistic?’. But who am I resentful of in this case? Am I angry with the Universe or God or whoever I feel played a part in this? Am I resentful of other families with their perceived ‘perfect’ children? No, not those, we don’t know how happy they really are behind closed doors or what their futures will hold or indeeed what their lives are really like. Do we ever know what anyone else’s life really feels like?

On a medium bad day, I may be resentful of families who only have one child with autism and are maybe also having a bad time but seem to feel very sorry for themselves and I want to say ‘but you only have one, I have all four’ and I feel resentful that they may have other children without autism but they are still feeling hard done by.

On a day like today, I am just vaguely resentful. I am absolutely worn out and worn down, nothing new after nearly 18 years but I don’t resent my boys at all. I love them for ever and will do everything I can for them which means not really having anything left for myself. I am not trying to sound saintly in any way, I have always known that the pay back will come and it has. I devoted myself to ABA for all four, fighting tribunals for them, getting everything they needed and providing a happy, stimulating family for them to grow up in and now I am reaping the rewards of children who have a place in life and a real love of life and everything it has to offer them.

But…I am resentful that I still don’t have time for me in all this. My needs and wants seem to come last, today’s resentment was unfairly pitched against their father for being able to have a little bit of life of his own. He works long hours full time, someone has to work, I cannot. He needs a break and is still well enough to want to go out , I have had adrenal fatigue for so many years that even if I have time off, mostly I want to read and sleep. So, my resentment was at him for taking up a new hobby that will mean he is out for another evening a week while I am stuck at home, as always. I could get a babysitter and join him but by the evenings, I cannot concentrate.

I am resentful of those who have family support when we just have each other to rely on.

But I am grateful too for so many things and people and on days like today I need to turn it around. I have friends who are there for me in spirit if not with time, I have a second family of ex tutors and carers who mean so much to me and the boys and who I love dearly. I have a husband and father for my boys who shows us all unconditional love and is much less resentful than I am about our situation (maybe he would be too if he had to manage the boys’ lives 24/7 like I do).

Battling for the boys takes its toll and at the moment I need to take a deep breath and take on the world again for them and trust that I will manage it all.

Being resentful is of no use but I am human and some days I can’t fight it so I will just sit with it until it fades away as it always does.

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Back to school

My boys all finally go back to school on Monday after a 4 week holiday, well 4 weeks combined for me as they are 3 different schools.

We have chosen their schools to suit each boy individually so we now have three schools in very disparate locations which can make life hard for me sometimes . The older three all get LA transport to school. ‘Oh how lucky you are to get taxis for your boys’ people remark. I just respond with ‘I would feel very lucky if they were able to take themselves to school’.

The twins, 17 are at a special needs school  in central London, our middle son is at a large independent school for specific learning needs over an hour away down the motorway in Surrey and the youngest is the only one still at mainstream school but with full time 1:1  support in the form of ABA tutors.

None of the schools are autism specific; we made a decision early on to try and keep the boys with either mainstream children or a mix of other children with varied needs. After all, our home is like its own mini autism school 24/7. How will they know about the rest of society if they rarely get to meet them? It’s not like other families where siblings may bring home neurotypical friends to tea.

It can be a difficult decision to make, which school to send your child to. Mainstream with support or special needs? All our boys went to mainstream with ABA support at primary age. I think this meant that they got exposed to a wide variety of other children and to the hustle and bustle of a large school environment. I am sure at times it was hard for them and how hard would it have been to continue that into secondary school ?

It’s hard to be a teenager: you want to be like everyone else and not stand out. I reasoned that being at mainstream secondary with a tutor or support worker everywhere they went would mean my boys would have really stood out and exposed them. Also, if they couldn’t follow a GCSE curriculum would the school have the expertise to teach them alternative courses? So, for secondary , we chose specialist schools which could offer a high level of support but a similar level of support that the other children attending also needed so they wouldn’t feel ‘different’.

I won’t discuss the difficulties of funding here if you choose a school outside your borough which we have done.

We are now in the process of choosing further education for our twins who turn 18 in March. They have an unusual mix of very high non verbal IQs and very low levels of language.  They cannot easily access education and have been unable to take GCSEs (except art and one twin has taken maths GCSE 3 times now) due to their language disorder but they thrive on learning. Special needs colleges offer  vocational courses which are less academic so we are now aiming at mainstream colleges and we will have to apply for an EHCP from 18 to get the necessary 1:1 support in place so that they can access some BTEC courses.

The saving grace for the boys is that one twin is a talented artist and the other a musician, mainly a drummer, so we have had no problem in actually choosing appropriate courses as the options are so obvious. The whole process however is a daunting one and we have many professionals involved as the EHCP will also cover their social needs in the transition process to adulthood. It’s almost as hard as the original statementing process was back when they were 3 and first diagnosed but without the shock and grief we were going through at that time. So, it’s a much happier process now and although we still don’t know what the future holds for them, it is a lot brighter than the one we were offered at age 3. p1040382