I have decided to write this blog to give a Mum's view of the ups and downs of a child suspected of having ASD (Autism Spectrum Disorder). We are just 3 days away from an ADOS test (http://en.wikipedia.org/wiki/ADOS), for my 4 year old daughter, which I hope may give us a diagnosis and help ease some of the self doubt I feel.
Here is our story so far:
S was born August 2007. Birth was normal, 4hours of labour no complications, just gas and air for pain relief. I developed PND and a lot of our life was spent inside just the two of us. I spoke to her all the time and she loved to sit in her rocking chair, from an early age I remember that when upset she found being sat in her chair being sang or spoken to much more soothing than cuddles. Everything seemed to be developing fine and the only thing raised at her 9month assessment was a slight turn in her eye, which was referred but could not be fully investigated until she was around 2 years old.
S did not start crawling until she was 11 months, we were not too concerned as she seemed advanced with her speech and had a huge vocabulary. By 18 months she was showing no interest in walking and started to knee walk. She was referred to have her legs and feet checked and found to be hyper-mobile and have flat feet. By 2 years she would only walk holding someone’s hand and resorted to knee-walking if let go. By this age I was saying 'It's not that she physically can't, something is scaring her.' A month after her 2nd birthday she was diagnosed with astigmatism and given glasses. A week later she was happily walking alone. S is not a climber and really struggles with park equipment. It takes a lot of encouragement for her to try climb a new thing and a small set back can resort in meltdown and her refusal to try again for some time. Even when she has cracked something when we re-visit she may take a while to rebuild that skill and if it has been a long time we have to start all over again. This is true for many of her skills, not just climbing, she is very afraid of not doing something perfect the first time around and very reluctant to try new things.
S took a long time to potty train and was not fully toilet trained until she was 34 months old. She is still not dry at night (despite two lengthy and stressful attempts) as she sleeps too heavily to be awoken by a saturated bed! Training was not helped by her huge fear of hand-dryers, I try to use disabled toilets if they are unlocked and free as she gets very upset at even the thought of one going off. She will waffle on and on the whole time we are in the toilets about someone setting them off, and if they are set off she will cover her ears and it is very hard to get through to her, we have to stay in the cubicle until they have stopped. I carry hand gel now and always tell her we can use that and leave as soon as we are out of the cubicle but public toilets are still very stressful places for her. She is also scared of hair-dyers, vacuum cleaners and loud vehicles (including emergency vehicles).
S did not socialise much as a toddler. I did try to take her to see friends with children of similar age, but due to my on going battle with depression it was not as regular as it perhaps could have been. I did try a local mum's and tots but due to the cliquey nature and the mums not watching their children I stopped going. S displayed a few things that looking back could have been warning signs but I put down to her lack of social practice. She snatched things, would cuddle and not seem to understand when to let go, hated when another child hugged her. She would group toys and carry them around, for example all 3 of the fairys, both iggle piggle toys. If she put one of these down and someone picked it up it would cause mass upset. She wasn't happy with one each she needed all of those toys in the group. Her soft toy collection is where this behaviour showed most. An example of this is she has a lemur toy that when she chooses to have she has to have the smaller one too and will not settle until she has them both (she still does this today).
Despite the things I have mentioned S did appear to be a very happy child and we often thought we got lucky as she seemed to miss 'the terrible twos'. She is also very bright and can talk very well, although her speeche seems very formal and almost too grown up for her. She knew all her colours by 2 (a skill not expected until 3) to name but one example.
In July 2010 I gave birth to my second daughter (E). S really struggled with her crying and stood holding her hands over her ears. She often asked if we could put her back in my tummy. She didn't seem too bothered at having a sister nor did she ask to hold her. S turned 3 that August and then started preschool 3 mornings a week in the September. It is around this time that her behaviour became challenging. Back chatting, hitting out, tantrums. She was also having problems with her peers and the preschool could not get her to sit for story time. She did not seem to make/ keep friends like the other children. She would hit out or touch other children, she did however really enjoy and look forward to preschool. We put her behaviour down to all the changes going on in her life and the settling issues down to her lack of social interaction prior to preschool.
By April 2011 preschool was becoming really difficult, S was still hitting out and the preschool described her behaviour like a switch clicked and that was it they could not reign her behaviour in. Parents would stand around gossiping about her (within my earshot) and the general atmosphere was awful and very distressing for myself (I have since learnt all the mum's had a meal and Skye was brought up in a very negative conversation, how mature of them!). After speaking to the preschool and discussing how we were talking to S about her behaviour and doing all we possibly could that it was decided it was best we go speak to the Health Visitor. The HV agreed to go and observe her in preschool. She told us she found S 'fascinating'. The way she spoke was very interesting and her interaction with others was enough to want to come and do an assessment at home. This assessment scored Skye at 3years 10 months (her age at the time) however when looking the areas it showed that intellectual areas such as language she scored 5 years! However she only scored 2.5 years for social and self care! She was then refereed to the community paediatrician. The way it is done here all referrals are sent to a panel who then decide if it needs further investigation. This wait was extremely hard and I worried that if they threw it out it would mean I was failing as a mum. She got through and was seen in September 2011. Below are a few things the paediatrician reported:
- Says she doesn't have any friends (she had just started school then, but she still says this now).
- 'Has well developed receptive and expressive language skills, often using quite formal and advanced vocabulary.'
- was keen to talk but mostly about her own activity.
- Did not ask questions or show things to adults
- reluctant to engage in eye contact
- 'tone of voice was rather flat and lacked variation.'
- 'gross motor skills are immature'
- 'appears to have motor coordination problems, some sensory issues and some rigidity'.
S was then refereed to physiotherapy, an occupational therapist and an educational psychologist. She saw the physio beginning of December 2011. They were generally happy. Have given a few exercises to help her balance and coordination, they have asked to see her again in 6 months and referred to Orthotics. (who have given her insoles to stop her rolling her feet inwards).
We saw Occupational therapist in January 2011 who decided to start 1 x45 minute session once a week in school to help with S's bilateral and upper limb coordination and her fine motor skills. .
Educational Psychologist met with us at the school in January 2011 and we sat with him and the school SENCO. As soon as we sat down he started talking about autism assessments. At this point no professional had mentioned the word Autism so it was a bit surprising to hear, relieving all the same. From what he had already read he was thinking that is what they are expecting to find, talking to us very much cemented his suspicions. He then went into S's classroom and observed her for 2 hours. 8 weeks later after calls to get an update we were informed S would get an ADOS test 2nd April 2011.
In school S snatches and has problems sharing. The school are using a 'kind hands' book with rewards all her stamps in the morning and again for the afternoon.This is working some days but not others. They have her holding a weighted ball when standing in lines to stop her fidgeting and hitting/ touching others. This is very effective. She also does sensory activities with the TA.
A few other things that I feel may be indicators.
- Lack of concentration
- She still very attached to her iggle piggle toy rubs the felt bits on his head against her lip as a comfort.
- She doesn't sit still.
- Often makes a groaning type noises.
- Will grab someone’s face to get them to look at her and interrupt conversation.
- She 'gets' that hitting means time out but now exactly why the time out happens.
- Finds it hard to deal with change of plans
- Is scared of the wind and rain .
- Sometimes switches off and cannot seem to get her to listen
- Reacts to sudden noise (an example of this being banging noises from next room made her freeze and cover ears at the OT).
- Tendancy to go into what I refer to as meltdown over rather minor things.
- She plays differently to other children, grouping toys for example.
- Repeats things she has heard on films a particular favourite was saying 'Hey lazer lips. Your mama was a snow blower.' (short circuit) She remembers song lyrics after only hearing the song once or twice.
- She can remember minute details from some time ago yet not remember her actions from that day! For example seemed to forget she had hit out loads of times one day at school. But could remember not only that she had a kitkat in her lunch while on holiday 9 months ago but that it was the same day we visited the dinosaur park!
- She 'sensory seeks' by leaning and climbing on people, likes to touch things, 'shouts' and hums and just recently bites strange things...like flannels, the kitchen surface, tops.
- Anxiety over very minor things.
So yeah that's S's background story.
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