Not knowing I was autistic and the damage a wrong diagnosis can do.

E39F4485-1C3D-42D4-8B07-C18544F8A932I’ve always known that I’m different. At school I remember a teacher shouting at me because I’m ‘not of this world!’ And she’s right. I’m a spectator looking in.

As a baby I cried constantly, 24 hours a day. My mother was exhausted, stressed beyond belief and it’s why I’m an only child.  I did not have a language delay which is the main red flag for autism. In fact, I had a large vocabulary and was speaking in sentences by 12 months old. My mum thought that this must just indicate I was bright.  I also had no problems learning to read or with self help skills. However, I hated nursery. My mum tried numerous times to make me go but I was kicking and screaming the entire time. I hated the unfamiliar smells and bitten plastic cups that I was expected to drink out of. Eventually she stopped taking me. When I started school, things were much the same. Except this time there wasn’t the choice for me not to go. So I just cried every day in reception and my classmates would offer me toys in exchange for me to stop.  I panicked about all sorts of things that wouldn’t bother most children. And I had chronic emetophobia.

I’ve lived my entire life feeling that I just don’t fit. Rather than knowing I had a disability it felt like I couldn’t get anything right. Everything I do is out of sync with the neurotypical population. I don’t communicate properly with people. I need to hide in the house. Anyone coming to my house feels like a violation even though I WANT to see them. It is really not that I don’t like people.  I’ve always done unusual things or experienced unusual thoughts which I keep to myself because ‘normal people don’t do / think that’.

Although I have a daughter with Autism, it never occurred to me that I myself might be autistic except for a friend of mine. He apparently knew I was autistic when I was admitted to a psychiatric ward with my youngest daughter when she was only a few weeks old. I had been having a bad few years of abusive relationships, self harming, little sleep and chaotic thoughts. I had various different psychiatrists try to work out what was going on. Some of them thought I had Borderline Personality Disorder and others that I had bipolar disorder. I ended up being labelled with both. Then I was stuck on Seroquel which just made me feel excessively tired.  The time I had in the psychiatric ward was helpful. It was quiet, nobody could hurt me or shout me. I had a room with a label which said ‘Helen & Isabella’. The days ran according to a set routine. The food was very nice. I fed my baby, rocked her to sleep and read books. I didn’t have to do any adulting. The staff noted that I was a good and capable parent. They were not concerned about my children.

Later, when I got out I found a psychotherapist who worked with me for about 2 years. She was wonderful, and helped me to stop self harming. But I could never easily discuss my feelings because I can’t identify them very well. This is a condition known as Alexithymia which is common in autistic people.

The wrong diagnoses that I received have caused fractious relations and tensions with my parents because various professionals have tried to blame them for my difficulties. The final straw was when I discovered that one psychiatrist had written a report which stated that I must have been sexually abused as a child because of my passivity and inability to assert myself in relationships, and my ongoing pattern of abusive relationships. It was at this point that I decided the truth needed to be discovered because I knew that I had not been sexually abused.  Something here was entirely wrong.

The fact is that Autism can present very differently in women from how it looks in men. A woman’s special interests can be typical of others but differ in their intensity.

When I was finally assessed, using the ADOS I knew without question that I was autistic. The test showed me why. The psychologist gave me a book with no words in at all. She asked me to construct a narrative. I couldn’t do it. I was preoccupied with the strange pictures and not being able to understand them.

l was asked some questions:

’Why do people get married?’

Because society expects it. People are expected to live in happy couples. 

‘What scares you?’

The concept of infinity. The idea that everything goes on and on and on – it makes me panic. I can’t deal with it. 

These were not neurotypical responses. I saw with clarity that my brain is wired differently. It was a relief. I am not the only person in the world who is like this. I just have Autism.

When I look back on my life now, it’s much more possible to make sense of the things that I didn’t understand before. My failure at healthy relationships has to do with the fact that I don’t choose a partner based upon sensible, neurotypical criteria. My ideas about who I should be with are based more upon whether I like the smell of them, or the words they use or the firmness of their touch. I can’t stand light touch. It’s enough to explode a lightbulb in my brain. If someone uses a turn of phrase that irritates me I will end a relationship over it.  Not exactly reasonable but once my desire is gone, it’s gone.

Rudy Simone’s book, ‘Aspergirls’ is a great read for any woman on the autistic spectrum.  It raises some of the issues which people don’t typically associate with Autism and that are quite specific to women. It can really be very damaging to receive the wrong diagnosis. One example of this in my case is that I find SSRI medication very helpful for my anxiety but no doctor would let me have it whilst I had the wrongly applied bipolar label.

If I had known from a young age that I was autistic then I do believe that my life would have been better and I could better have understood myself instead of feeling continual shame that I fail at everything. My parents are a little more patient with me these days and I think they also feel better knowing they are no longer blamed for my difficulties. I also realised that in my baby / childhood photos I hardly ever looked at the camera – go figure. The signs were all there from the very beginning.

‘People shouldn’t judge but they do’

DB243980-E487-4206-A89B-2A075BF01B6EI often hear the parents of children with Autism say that they become isolated from other people.  And I can see why.  People don’t want to understand.  They don’t want to make allowances for your child even though there are plenty of things about them that I could judge! They think your child ‘looks normal’ and have no idea that some people’s brains are wired differently than others. So they might react differently.

So yesterday I took my two younger daughters to a firework display with a friend and her daughter. My friend insisted on going in two hours early, which I knew would be a bad idea and said so but this was just another situation where I allowed myself to be bossed around against my better judgement. My 13 year old is NT. No problems there… The 8 year old has autism but appears to be high functioning. No language delay. Her problems are more subtle. She can engage in every day life and appear to be fine. But when she gets overloaded she becomes very loud. She is not the passive, withdrawn (and therefore more socially acceptable) type of autistic girl that I was. Who was seen and not heard. I have let people push me into relationships I did not want. I have allowed people to do horrible things to me and not react, because I didn’t have (and still don’t really) have the social skills to deal with it.

At the firework display I was trying to explain to my 8 year old that she needed to be careful and sip her hot chocolate because it might be hot and burn her mouth. Since she was beyond processing this, she didn’t hear what I had said and what followed was a bit of a meltdown because she took a gulp of the hot chocolate and burned her mouth. She wasn’t hurting anyone else in what was already a loud environment. But she did become a bit heightened.

My so called friend thought that this would be a good time to say to me ‘Ha, ha, ha that woman just said your daughter’s a nightmare.’ Then later she decided to give her unwanted opinion that my daughter was ‘a lot worse’ than last time we saw them. Well yes, at the moment her difficulties are more apparent. She has very severe OCD which is a common condition to be found in those on the spectrum. She isn’t really very well. And this can be seen by the amount of stimming she does to soothe herself.

Then the commentary continued onto my older daughter. Apparently she’s very ‘chilled’ and ‘puts up with a lot’. Well yes, she’s NT and her brain is wired in a way that fits in ‘properly’ with society. She doesn’t have sensory processing difficulties like me and her sisters. She tells me to ‘calm down mum’ when I get unduly anxious and stressed in a traffic jam. None of this means that she’s superior to my other children. She’s just lucky.

Needless to say I am not ever putting us in a situation like that again.  I do not like fireworks and crowded places. I get overloaded too.  Although it’s less obvious to those around me. When we got home I had a headache and we all went straight to bed. Since I don’t have the social skills to raise this with my so called friend and deal with it then I will just distance myself.  People all seem to have a way of minimising their own behaviour and saying that I’m imagining things so I just won’t bother. And I won’t feel any kind of loss either. Life’s just easier when you don’t have to deal with people and their unwanted, uneducated comments.

ABA – why are people spreading misinformation about it and describing it as ‘abusive’?

The high functioning autistic community in particular has shown its tremendous dislike for ABA programmes in the past weeks.  As someone who chose ABA as a method of teaching that I believe my severely autistic daughter actually needed more than anything else, I resent the implication that I’m a child abuser. Just think about what you’re saying, ok?

I can’t write everything about ABA here because it would take too long, except to say that it is a very effective teaching technique for young children with severe autism.

When Lorna was 2, she could do nothing but stim all day. I wanted her to be able to learn FOR HER, not for me. I wanted her to be able to enjoy her life and make choices about it. None of which she could ever have done without ABA. I went  through the motions of taking her to the Child Development Centre Group ‘Little Stars’. All she did was spin around the outside of a room and jump in the corner. Just like she did at home. The staff commented on how cute she was and pretty. Meanwhile, I was panicking about how she was the only child in the room who couldn’t sit down or focus for more than a second and couldn’t even choose what snack she wanted.

I would like to make the following points about ABA;

ABA is not a cure for Autism and anyone who thinks it is needs to re-examine why they are doing it.

As a parent, you choose a provider who treats your child with care, respect and love and who does not do anything unethical. The moment they do, you show them the door. Just like we all do with ANY education provider. Not all nurseries are the same. Not all ABA providers are the same.

A good ABA programme should not look like the techniques used in the 1960s and should focus heavily on positive reinforcers and tutors who the child has a great relationship with. 

Stimming is a natural thing for autistic people to do. But if all your child can do is stim all day, they are never going to engage with FUN activities that the world has to offer. They will be bored and frustrated. To leave them like this is not kind.

ABA is not in my view suitable for every child with an ASC and I also would not keep on using it once a child has reached 10/11/12.

Lorna is still quite severely autistic at 15. She now attends a residential school for children with Autism. She is doing very well there and is described as very bright. She is also able to use a lot of language to make her needs known. And we owe all this to the ABA programme. Of that I have no doubt.

Before you write off ABA I would urge you to see a home programme in action and what it looks like. The recent Chris Packham documentary has provided bad examples of ABA and is in my view propaganda about the therapy. There is no way on earth that I would send my child to a school where autism is regarded as ‘a cancer’

The above video shows Vince Carbone talking about what ABA is. I have a great deal of respect for this man and have attended one of his 3 day conferences. He showed how ABA could provide successful techniques for a child who was regularly being restrained by his SEN school in the states. Do you think this looks like child abuse? Really??

Where it all began…..

Or at least, as far as I knew! I had never even heard of Autism until I had my oldest daughter, Lorna who is now nearly 16 years old.  Lorna was a lovely, beautiful, affectionate little baby and she is still all of those things. But as she got past one year old I began to notice that she was completely differently from other toddlers her age.  I would take her to toddler groups and really struggle to get her to sit down for any length of time.  She would run around the outside of the room, collecting toy spoons until she couldn’t carry any more. She was unable to imitate either adult led activities or those of her peers. I began reading and researching, which is what I always do when I don’t understand something. Slowly it dawned on me that Lorna had Autism.

Even though Lorna was only 2, I could see that her deficits were going to cause very significant disability for her in later years and throughout her life. I decided I wanted her to do ABA (Applied Behavioral Analysis). When I mentioned this to our paediatrician she simply stated that ‘Oh there are many weird and wonderful interventions out there. In the States they inject kids with secretin’. Undeterred, I was determined to get a diagnosis so that Lorna could begin ABA. It was the only thing that could help a child so hard to reach. I was never one of those parents who felt that ABA could cure Autism but I wanted Lorna to learn some basic skills so that she could begin to enjoy her life. At this point she spent her entire day stimming.

Eventually I took her to see a specialist developmental paediatrician in Kent at my cost and she was jointly assessed with Auriol Drew, a SALT (Speech and language therapist) with great insight into the condition. Lorna was subsequently diagnosed with classic Autism. The doctor commented that although Lorna could not play she was incredibly bored because she didn’t know how to spend her time and could only do an activity’s with intensive 1:1. I was more determined than ever that ABA was the only starting point that would help Lorna.

We began ABA shortly afterwards and I saw amazing results in my child. Within 6 weeks Lorna was verbally requesting items, responding to her name and saying ‘mummy’ and ‘daddy’. She had previously been non verbal. I felt as though angels had come into our house to help her. And to this day I know that ABA has improved her quality of life so much.

However, I soon found myself in the position of having to fight the Local Authority to be able to continue funding the program which costed up to £50,000 a year.  This was a stressful process for me. I was only 23 years old and I could not understand the cynical, indifferent and sometimes downright antagonistic attitude I came up against  from LA staff. I had to deal with LA Educational Psychologists writing personal comments about ME in reports which were supposed to be about my daughter. Apparently I was passive and did not provide them with a drink when they visited our home. What this had to do with anything I have no idea. Later, when I did a data search in preparation for tribunal I found hand written notes from the EP which stated

’The LA cannot afford to fund this. It will set a precedent and cost loads’

We live in an area where there isn’t any Autism specific provision for autistic children and it’s especially sketchy for those at the severe end like Lorna. To cut a long story short, I won two tribunals against our LA and they had to provide what I was asking for. In recent years I pressed them to provide a placement at an independent residential Autism specifics school which this time they agreed without a tribunal, thankfully. Lorna is a very complex child but she is intelligent and is doing very well.

I will at a later time write a post about how to negotiate the process of getting educational provision and benefits that your child may need.

Hello to everyone ND and NT 😊

I have decided to start this blog to help others who are trying to find out about Autism and what the condition means. Maybe you are the parent of a child who is on the path to diagnosis. Maybe you suspect you have the condition yourself.

Obviously I can only speak about it from a personal point of view. I feel that women on the Autistic spectrum are massively underrepresented in the media and so people don’t know very much about how autism presents in girls and women. Since I am autistic and have two autistic daughters on different parts of the spectrum, I feel that I can give some much needed insight to those who might be seeking it.

I will be posting about how my condition affects myself and my daughters and also about how to secure educational provision for your child if they have an ASC and how to apply for other resources that are offered to children with disabilities. I know that we all have individual situations to contend with. I hope the information I’m going to put out there may be of some use to you all.