Complexities in the diagnosis of Autism Spectrum Disorder (ASD)

The following is my opinion as a parent of a child with autism who has gone through a diagnosis journey and of a person who hears a lot from other parents and adults about how hard it can be to get a diagnosis if they request one.

People seek diagnosis at different ages.  You have tuned in parents who seek help with their 2 year old through to those in retirement who wonder if they have autism because they have learned about it and can match many of their attributes to it.  The difference here is that adults can seek diagnosis for themselves whereas parents have to advocate for their children not knowing if the children themselves will want to know about or use the diagnosis or not when they are older.

It has frustrated me for many years that diagnostic services vary so much across Scotland.  NHS services, charities and private consultants are among the many different agencies that offer diagnosis.  There are guidelines in Scotland for what an Autism assessment and diagnosis should look like.  This should be helpful for those people who are starting their diagnosis journey.  It was quoted on the radio this morning that the average person waits 3 years for a diagnosis.  I don’t think a diagnosis can be made quickly but adults should be able to get a decision much quicker than this.  I can understand that making a diagnosis in childhood should take longer.  The key age for symptom observation is age 4-5 so if a parent is seeking a diagnosis when a child is 2 years old then it would be important to observe how that child develops up until the age of 5 before exploring a diagnosis.  There will of course be instances where a clear diagnosis before age 5 would be advantageous and in the best interests of the child.

So why does it all take so long?  I think one of the reasons is that there is no clear pathway for an autism diagnosis in Scotland.  Assessment of autism should be thorough and not everybody with a question about diagnosis would warrant a full assessment.  Screening is a very important step before resources are used to complete a formal autism assessment.

Screening for autism should be able to be completed by many different people and be available in a variety of contexts.  For example, it could be occupational health service staff or teachers that work with children.  Screening does not need to be the work of a specialist service.  Children, for example, can be screened for autism by school teachers, playgroup leaders, GP’s, health visitors and parents.  Yes, parents can screen and often do.  In this modern age, parents and adults have access to everything via the internet and will often search the symptoms they see in their children or themselves.   I think this is great and if these people reach the stage of a specialist assessment then they will be armed with lots of useful information and examples to form a basis for the exploration of a diagnosis.

Screening varies and ranges from the internet search described above to formal screening using a standardised screening tool.  Good screening by education or health staff would typically include use of standardised questionnaires e.g. the Social Responsiveness Scale.  This would usually be completed in a few different contexts.  For example, for a child, one might be completed by the parents and one or two would be completed by teachers who know the child well.  This would give a picture of how the person is functioning in different environments and the score would indicate whether further assessment is warranted. 

Screening questionnaires are also available for exploring a person’s developmental history.  Taking this history just means finding out about how a child or adult developed  from birth to around age 5, focusing mostly on the year between age 4 and 5.  A popular tool is the Autism Screening Questionnaire.

I should say at this point that a person who may have autism would usually have difficulty in different environments rather than just one.  For example, a child at school would usually be struggling both at school and at home. 

Once the screening process is complete, some people decide not to go forward to the formal assessment stage and this is ok. 

So what if a child or adult has been screened and the contextual assessment, developmental history and their current difficulties point towards a formal assessment being useful?  This is the bit that a lot of people seem to get stuck at.  I think having a clear pathway would make this next stage less of an overwhelming hurdle.  Where do people go for a formal assessment of autism?  A lot of people seek help from their GP as they see it as a health concern.  Some parents turn to their child’s teachers for advice about diagnosis and are directed towards their school Doctor.

There is a risk of subjective opinion influencing the diagnosis journey at this point.  For example, there are grandparents who have misconceptions about autism and encourage their sons or daughters not to take things further or teachers who foster a ‘wait and see’ approach towards a child who is struggling.  This is frustrating and I believe it influences the path that people then take.  We know, through research, that outcomes are much better when a diagnosis is made as early as possible in children and yet a lot of professionals still hold on to the ‘wait and see’ approach.  I think waiting and seeing if a 2 year old develops autism is acceptable as they have not yet reached the key developmental stage of age 4-5.  I do not see the benefit in a 6 year old waiting for a formal assessment if the screening process has highlighted a need for further exploration of a diagnosis. 

Sometimes it is the professionals around a child that may be pushing for a formal assessment to take place but the child’s parents are reluctant or refuse to engage in the process.  This is a difficult situation but if screening is done well and the results documented and shared then  the subject of diagnosis can be revisited in the future.  It is worth mentioning that parents can underscore screening questionnaires because they do not see a problem in their child or are in denial that there is something wrong.  It could also be that they do not know enough about symptoms of autism to know what they should be looking out for.  Professionals who are asking parents to complete screening questionnaires should inform parents about what this is for and how it may be used so that they can participate as fully as possible. 

In order to protect resources and make sure that the right specialists see the right people at the right time, I think it makes sense that screening should be completed in most cases.  This protects capacity for the completion of formal assessments.   A fast autism diagnosis should not exist.  Autism is a lifelong neurodevelopmental disorder for which there is no cure.  If autism was my diagnosis then I would hope that this would have been thoroughly assessed so that I had faith that it was correct given the lifelong nature of the disability.  Autism is not a physical illness or mental illness but a disability that people are born with.  I won’t go into the possible causes of autism but there are many theories. 

There are many factors which influence a formal assessment of autism.  A  few of these are family disruption around age 4-5, parents who can’t remember much of their child’s fourth year due to their own ill health at the time, looked after children who may not have a consistent caregiver to give an accurate history, complex attachment difficulties and co-morbid complex mental health difficulties.  Some people identify more than one of these and this has the potential to influence an accurate diagnosis.  Sometimes a diagnosis is not clear cut but there are diagnoses which take this into account including Atypical Autism and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS).

Some parents or adults have ideas about which ‘label’ they would most prefer if a diagnosis is to be made.  Some parents like ‘Aspergers Syndrome’ as they believe that it gives the impression that their child is cleverer than others, however, that child may remain very socially disabled.  I included the word ‘Aspergers’ in my blog title but the term itself is being phased out.  It is being removed from the American diagnostic manual and the UK may follow suit.  Specialists in autism assessment are now increasingly using ‘Autism Spectrum Disorder’ or ‘High Functioning Autism’ as a diagnosis.  I feel that this better reflects the condition and my son and I choose to use the word ‘Autism’ when discussing his disability. 

I have a clear idea about what a full and thorough assessment of autism should look like and feel very passionately about this.  If a formal specialist assessment is required then it should be done correctly.  The assessment should include:

-          Contextual information about the person e.g. from teachers, family, the person themselves and observations of the person in the community – this helps to build a thorough profile of the person

-          A ‘here and now’ assessment of their current social communication skills – ideally this will be a standardised assessment e.g. the Autism Diagnostic and Observation Schedule (ADOS)  - any standardised assessment  should be used correctly and fully by a trained professional

-          A full developmental history focussing on a person’s early years especially age 4-5 – ideally this should also be a standardised measure e.g. the Autism Diagnostic Interview – Revised, this should also be administered by a trained professional and used  in its entirety

The standardised assessments named above are the ones that I am familiar with but there are many more available.  Standardised measures should be used as they ensure an objective, measurable assessment. 

In an ideal world, all people in Scotland who wish to explore a diagnosis of autism should be able to access this without unnecessary delay.   The screening and formal assessment process would be fair and equitable across Scotland.  Scottish policy is beginning to incorporate the needs of those with autism and their carers.   I hope this trend continues to a point where we get the diagnosis journey right.

Primary 4 - A difficult phase

I've entitled this post 'a difficult phase' as it was just that, a phase.  It felt like hell going through it and it lasted around 8 months but we came out the other side with lots of lessons learned.  It was around this time that I stopped writing this blog regularly as I felt I didn't have many positive things to say at the time.  I have always wanted to write about that time and to reflect upon what helped and what we learned.

We moved house at the start of August, just weeks before T1 moved into Primary 4.  I naively thought that T1 wouldn't be fussed by the move as we only moved across the road.  It was painful for him to be able to see our old house out of our new window.  Despite our new house being bigger and him having a room of his own, which was much bigger, he took a good six weeks to settle into the new house.  He used to sit by the window and look longingly at our old house and sleep on the floor sometimes because he said his bed didn't feel right in our new house.

The boys and I moved into the new house with my new partner.  I got on well with him but after around 6 months, it became clear that we weren't going to work out long term.  T1 found his sarcasm and childish behaviour difficult to comprehend.  T1 may have picked up on the disharmony between us which may have unsettled him.

T1 had two teachers in P4 who job shared.  In the first part of the year he felt that his teachers 'did not understand Autism'.  I had given his teachers a profile of his current strengths and difficulties and some information on ASD.  This is something I do every year as the information personal to T1 changes.

I have always felt able to cope with whatever T1 throws at me but his behaviour during this time was becoming increasingly difficult to cope with and I knew it was becoming a serious concern when he was distressed both at school and at home.  At the height of this phase, his school teachers were saying that they were struggling to cope with him in a mainstream class and that they weren't too sure how much longer they could go on.  I felt like that myself on a few occasions and was feeling at a loss as to what to do for the best.

The school sought input from their Educational Psychologist to see if she had any further ideas or strategies that would be useful. The head teacher initiated regular formal meetings at school to make sure that we were all communicating as much as possible. These meetings took place monthly when things were at their most difficult.  I consider myself quite a 'holds it together' person but I burst into tears regularly at these meetings.  I was so worried about T1.  I must point out that t1's difficulties at this time drained me emotionally.  I felt upset that I couldn't change things more quickly and guilty that perhaps I may have contributed to what was going on.  It is really difficult to ask for help when you are feeling broken by what is happening but I managed to seek help from a variety of places which I will detail below.

I have listed some of the issues we were facing at that time:

- T1 seriously hit and bit his brother and verbally abused him for no apparent reason
- T1 was physically aggressive with me on a few occasions including one time in the middle of the street where a passing man had to intervene.  He was growing in strength and it was scary.
- T1 would be awake at night several times and require my assistance and reassurance to get back to sleep e.g. waking me up because he thought he heard thunder and not being reassured that that wasn't the case. I was exhausted from the sleepless nights.
- T1 was exhausted some days as he had been up several times in the night and this made him more susceptible to being aggressive
- T1 would become very angry if I changed small things in his routine e.g. having pizza instead of chicken
- T1 would be verbally and physically aggressive in the classroom with both teachers and pupils
- T1 would feel such remorse after incidents that he would sometimes bite himself or write notes about how his life was hopeless and that he wanted to die
- T1 got into a habit of confabulating elaborate stories about things he had done or wanted to do
- T1 expressed that he hated having autism and would refuse to talk about this

There were probably more to add to that list but those are the main things I can remember now.  I wish I had written about it at the time but I'm not sure I would have had the mental capacity to do so!

I will now try to explain the things that helped during that time:

• I didn't behave in a way that made it look like I was panicking (even if I felt like it inside) - my child is hitting other kids, some of which are my good friend's children - cringe!!  My child's teachers are saying they are struggling to cope with him - oh no!!  My son is telling me that he wants to die and hates having autism - noooooo!!  This phase didn't start overnight but it progressed over a short time and it wasn't long before I was at a stage of either panic or stop and think of the steps I needed to take to make the situation better.  On the face of it, it looked like my son was aggressive and suicidal at 8 years old.  I didn't see it that way.  Obviously I was shocked at the extreme nature of his words but I saw it as a way of him expressing to me just how difficult things were for him and a way of making his family sit up and listen.  I didn't rush him to the Doctor because essentially he could not help with most of the things that needed to be done to help.  I did get an objective opinion in the end from a child psychiatrist (by referral from our GP) to make sure that I hadn't missed anything and I did not request this assessment because I thought they could fix the situation.

• I monitored and promoted positive mental health - It is really common for people with ASD to have anxiety and mood difficulties at different times in their lives, especially those times when routines and environments have changed or are unpredictable.  I have some knowledge of these difficulties through my work but nothing could have prepared me for lying on the floor with my 8 year old son who was sobbing uncontrollably after an incident where he had been aggressive.  He told me whilst we lay together that he wanted to die and that he wanted me to get rid of his autism.  I try my best to never cry in front of my children but I would challenge any parent not to shed a tear in that situation.  I lay next to T1, unable to hold him close because it would be too much touch for him.  I could have bribed him with nice things to make him feel better, distracted him by being goofy or told him 'don't worry, things will be fine'.  I didn't do any of these.  What my little boy needed was for me to simply be there and to listen and talk softly about how things were.  We chatted in general about how most children with autism have times when they don't like it and that things were so difficult at that time that he was so sad he wanted to die.  I told him that I loved him and that that meant that I would always be there for him, as would our whole family.  We would do what we needed to do to make him feel safe and would not be angry with him for the distress he shows when things get difficult either in anger or sadness.  I had to repeat this several times over some weeks but it was really important to do this so that he felt that I was listening to him and that I was doing what I could to make things better.  What was also important was to re-iterate to him the practical things we were doing as a family and as a wider team around him that would make things better over time.  He didn't believe things would get better.  I had to show him that I had hope when he had lost sight of his.  A friend had a great idea and suggested I make a box of positive affirmations about T1 and encourage him to pick a couple out each day.  This was to promote self-esteem and included statements like 'I will always be loved by my family' and 'I know more about geography than the average 8 year old'.  T1 enjoyed this and this became part of his morning routine. A very simple idea but really effective. 

• I asked for an objective opinion - when I felt out of my depth and felt that I had run out of ideas, I sought an assessment from t1's consultant psychiatrist.  I didn't think I would be doing my job as a parent properly if I didn't ask for an assessment given his low mood and extreme agitation and anger.  I wondered at the time if he had difficulties with impulsive behaviour and if he was truly suicidal.  He was seen within around 6 weeks of referral and the assessment concluded that no, he was not impulsive and developing ADHD type symptoms but displaying quite usual behaviours for a child with ASD who had been through so many environmental changes and changes to his usual routine.  I trusted this opinion and was glad there wasn't anything to add to his diagnosis of ASD but on the other hand was still wondering what the heck to do!  I just knew it was my job as his mum to do what needed done because I would be the most efficient at doing it. 

• I leaned on my friends, family and colleagues - my close friends and family were there to listen and help as required with a non judgmental attitude.  I don't mean the ones that say 'every child is different and go through phases, it will get better soon'.  That was no use because I honestly couldn't see an end to it at that point because I had no plan on how to turn things around.  The really useful friends said 'I am here for you, you are not alone'.  I felt bad about going on about T1's tough times but it was really important to let people know the difficult stuff we were going through.  My friends told their children about how T1 was struggling in school so that they could support him too.  My colleagues at work were very supportive at this time when I needed to take time off for school meetings, hospital appointments and because I was so drained on some days I had to go into work late or take the day off.  The people closest to me were the ones who gave fantastic suggestions on how to make things better and gave ideas that made common sense when I couldn't see through the fog I was in.  If any of them are reading this... you know who you are and a massive thank you for your kindness and support :-)

• I communicated well with school staff - we had an agreement during this time that I would call to let them know in the morning if it looked like it was going to be a bad day with either aggression or sadness and that they would let me know if incidents had occurred in school.  This was so useful and I really trusted that they would let me know the relevant things that happened, not every word or little argument T1 had.  Where a consequence was required then school would give this in school time unless they felt it was of a serious nature that had to have consequences at home too.  The head teacher was involved during this time as T1's difficulties were having such an impact on school life.  I felt his school were trying their best to do what they could to improve things.    

• I communicated well with my my ex-husband (DP) - we had to communicate very well and at least weekly about how things were going and making sure that we were saying the same things to T1 and implementing the same consequences for difficult behaviour.  It was important for T1 to know that those closest to him were being as predictable as possible in order to change his behaviour to more positive ways of expressing himself.  

• I looked at my finances and got the help I was entitled to - I knew that t1 was most likely entitled to Disability Living Allowance (DLA) but hadn't got around to applying for it. It is non means tested for a reason, because despite having enough money, raising a child with a disability places more pressure on your finances.  Having to make more time to be around and supervise T1's behaviour prompted me to apply.  I thought it would give us more funding for doing activites with t1 that he enjoys but cost money.  E.g trips to a favourite airport to planespot.  We also required to buy some equipment for him e.g. sensory toys.  We also applied for a Family Fund Grant and a grant towards a holiday (Take a Break) - and I really needed a holiday to look forward to!  We were awarded all of these and they helped so much in giving more resources through our journey with T1.

• I made time to do all that I could to get things as right as I could for T1 - things had been going reasonably well since diagnosis but a crisis like this reminded me that my little boy has a neurodevelopmental disability.  I may have to support him in a variety of ways throughout his life and was able to accept that the support required would come and go in phases.  His parents are the people who know him best and any support he requires I felt had to be directed by us.  I did not feel it was acceptable to ask a Doctor, Educational Psychologist or teacher to solve the problem, however, their advice is vital.  Helping T1 was very clearly a job for all those working with T1 with us, as parents, having the largest role.  During this time I made sure that I made regular catch up times with T1, time to accompany him to engage in his interests, gave him things to look forward to (not bribes) and made sure that I kept him as healthy as possible to give him the energy to be able to accept and act on advice.  This involved keeping as much as possible to a clear routine and taking time to support t1 if the routine changed.  He needed lots of sleep, good nutrition and plenty of exercise and fresh air.  It was my job, and still is, to encourage this as best I can.  

• I got external support just for me - when t1 was first diagnosed I was told about a third sector agency who offered carer support.  I didn't feel that I needed it at the time and the leaflet hung around in my paperwork pile.  In the midst of this crisis, I remembered where to go for help, for myself.  This was really hard, emotional and drained me of energy but I had to keep going for our family.  I met with a lovely carer support worker who was there just for me.  This really was invaluable and we met fortnightly at a time that suited me.  She also offered to see me at home if I needed.  She had a comfy sofa, a large warm mug of tea and a biscuit. The value of these can never be underestimated!  She was clear that she was there for me, to listen and offer tissues when I needed a good cry.  It was in this room that I was able to express the heartache I felt that my son was facing such overwhelming challenges and worries for his future.  It was this lady that gently prompted me to apply for benefits and grants to help with the practical things.  She also encouraged me to meet other carers and access the range of free services for carers such as free massage and reflexology.  I don't meet regularly with this lady now but I know where she is if I need her.

• I tried my best to stay healthy - I had to keep myself in tip top condition so that I could wake every day with the energy to cope with what came up.  I went to bed by 11 and got up at 7 every day and tried to stick to this sleep routine.  I tried not to nap so that my sleep routine would be as consistent as possible, despite being woken several times in the night by T1.  I ate well, having my 5 fruit and veg portions per day.  If I didn't do this I felt really lethargic.  I tried to avoid loads of sugar, despite the fact that I wanted it, as this just gave me an almighty sugar low which confined me to the sofa and got me down.  I also avoided caffeine as the headaches were unbearable.  We all tried to get outside as much as possible for fresh air, sunshine and exercise, even just for a 10 minute walk.  This was especially useful when T1 got caught in a repetitive moan about something that he was feeling sad about.  Gettting out and into a different space with distractions took the focus off his feelings for a bit and was restorative for all.

• I asked school for extra support for T1 - School arranged for T1 to meet with a behaviour support teacher every week for at least half an hour.  He was a male teacher who was very wise and displayed a good knowledge of ASD e.g. he brought in pictures of supercars for T1 to start the conversation off and build a relationship with him at the start of each session.  T1 respected him and felt able to share how he was feeling and discuss incidents that had taken place both at school and at home.  T1 was able to tell this teacher about things that he couldn't share with me e.g. he hated how I nagged him a lot and raised my voice some mornings.  I thought that was really helpful, of course it's what most parents do at times but it was really important during this time of trying to gain T1's coperation that I listened and tried my best to stay calm in the morning.  Over time this teacher only saw T1 for 15 minutes a fortnight to maintain the work that he had done.  He taught T1 about how to manage anger and anxiety and how to restore friendships once there has been a disagreement.  This is what T1 really needed at the time.

• I got support for T2 - Things were really tough for T2 during this time.  He was the subject of physical and verbal aggression from T1 and time with him was often limited due to the needs of T1.  His favourite activities were often cut short due to having to return home because T1 couldn't cope.  I tried my best to make special time with t2 during this period when we could be alone to do activities but I still felt incredibly guilty.  I tried my best to explain what was going on and how we could all help each other.  T2 was only 6 at the time but was really resilient and he did all he could to help his big brother.  I let T2's teacher know what was going on for him at home.  She checked in with him every week to see how he was doing and let me know if she had any concerns.  I also referred T2 to the local young carers group.  He met a worker at our home and in fact that very day he had been bitten all the way up his arm by t1 so it was good timing for meeting this worker!  This worker supported t2 weekly for a period of 3 months both at home and at school.  It was a space for him to share his feelings about how things were going, how he felt about it and how it affected him.  T2 doesn't see this person now but can access it again if he needs to.

• I encouraged contact with T1's classmates outside school - As always, T1's friends supported him through this time, despite the fact that he hit a a few of them!  They made really useful suggestions like things that he could do in class and prompted him to take time out if they saw signs of aggression etc.  T1 often listened more to their opinions than the teachers'.  I set up lots play dates with his friends around this time because I felt it was important to keep encouraging positive friendships through a time where he expressed sadness at having autism and feeling like he didn't have true friends.  My friends whose children were in his class were extremely supportive in arranging these despite the fact that T1's behaviour could be difficult during these visits.  I will forever be in their debt for their support and that of their children.  

• I insisted that school meetings were formalised - it was very important during this time to have regular formal meetings.  By formal I mean that there was a chair and that minutes were taken with clear action points that could be monitored.  This aided communication within the team of people who were involved with T1 and meant that any issues could be dealt with in a timely manner and that everyone knew what part of the plan they were responsible for.  

• School adapted the classroom - T1 was given a designated chill out corner in the classroom and was encouraged to take 'time out' by his teachers as required.  Over time he was able to recognise the need to do this himself and was able to ask for time out.  Time out usually lasted for around 5 minutes and the teacher would intervene during this time, if appropriate.  T1 had favourite books available in this corner and was still able to hear what was going on in the class.  T1 was able to take some favourite books, teddies or aeroplanes into the classroom during this time.  Whilst he didn't play with them in class unless it was invited, he just somehow felt more secure having these objects in the room.  They were often placed on a shelf overlooking him.  T1 was quite unmotivated to do most class work at this time.  He became distressed and cried when he couldn't pick up maths quickly.  He was moving from mental maths, which he was good at, to having to work things out and he lost patience trying to learn.  He fatigued easily when writing due to hypermobility so he became frustrated and angry at times when asked to write.  PE presented difficulties in group work and general poor coordination.  Art time was unstructured so he struggled with this and would often display inappropriate behaviour and shout out during this time.  His teachers learned that T1 would be more motivated to work and pay more attention if most topics could be related to his special interests.  These were aeroplanes, supercars and geography at the time.  They were really good at linking his interestes to the work they were doing  and this gradually improved his motivation to do class work.  T1 also had ad hoc pupil support time both in the classroom and in another room as required.  I trusted that his teacher would judge when this was required so this support time was not formalised e.g. set time every week.  It was also a small school so a formal system would probably not have been possible.

• I didn't let my heart rule my head - Seeing T1 so distressed was so difficult.  It was easy to understand how some parents fall into a habit of trying to make everything positive in a difficult time.  E.g not being too hard with consequences for difficult behaviour.  I was very clear throughout this time that I would continue to set consequences if instructed by school and for aggressive behaviour at home.  This included hitting, spitting, biting and swearing.  This took the form of 8 minutes time out in room and banning of screen time for 1-3 hours, depending on the severity of the behaviour.  Some people suggested that this was harsh given that things were so difficult for T1 but I saw it as my job as his parent to very clearly let him know that no matter how hard things are through life, it is never appropriate to be physically aggressive.  He hit my friends' children and it was important that they saw that he was given consequences for this and made to apologise sincerely, even if it happened in school.  T1 always showed remorse but this usually resulted in him hitting or biting himself to somehow make it right in his mind.  It was extremely challenging to follow through with a consequence when this was happening but it was absolutely the right thing to do.  He needed to know that I was in control and that it was my job to teach him how to behave appropriately.  I did not want to be a parent who was seen as letting him off with bad behaviour because of his disability.  He is clever enough to process the difference between right and wrong so he is able to accept the consequences. It took incredible self discipline to follow through on these principles when I was exhausted and wanted to make everything better for him.  

• Encouraged T1 to join extra curricular activities - At the tail end of this phase, T1 joined the local Cubs group.  The leader of the group took time to read the profile I had made about T1 and met with us at home to plan for his time in the group.  This included identifying a time out space in the hall and building a relationship with the leader so that T1 could say if he felt uncomfortable.  There was also no pressure for T1 to engage in any activity that he felt he did not want to do or try.  This worked really well and he continued at the group for 2 years and even managed a cub camp :-)  If that leader is reading this then a warm thank you to you from us.

I feel like the above strategies put together helped us to get through this difficult phase.  It took time, consistency, continuity and the ability to stick it out to get to the point where the difficult behaviours and moods reduced and that T1 did well in school and had good, settled times at home.  I still revert to some of the above principles now when we go through a difficult time, however, the work done during Primary 4 laid a good foundation and scaffolding to the strategies we still use now to help T1.  It is more a question of maintenance and recall now than starting all over again.  I cannot express how much it was worth all the effort.

My oh my this was a long post but I hope that if you made it to the end that it was worth it.  It has been cathartic for me to reflect on that phase and remind myself of what works when things get tough.

Primary 3

This is where my memory is sketchy and I wish I had written this at the time.  t1 continued to do well at school and continued to build good friendships in P3.  He didn't require any formal meetings and was discharged from the Educational Psychology service.  I had an agreement with the head teacher that we would meet in November each year just to have a catch up on how t1 was settling into the new school year.  The school were not obliged to do this but I wanted to make sure that meetings were scheduled.  If t1 was doing well and we didn't meet then he could fall off their radar in terms of offering support when required.    Not all schools are willing to have such an informal set up but I think this is reasonable as a minimum as he has additional support needs and its important to make time to catch up even when things are going well to learn what has helped things go so well.

T1 continued to use his writing slope and knobbly cushion to sit on during lessons.  During this year t1 changed his name in class.   He felt his name was too close in sound to another boy in his class and changed his accordingly.  He wrote this new name on all his school work.  Neither myself or the teacher tried to correct him but hoped it would be a phase, and it was - the phase lasted 2 years.  T1's behaviour was getting more difficult towards the end of P3.  He was blurting out words loudly, chewing his clothes and other objects like paper towels.  He collected staples and would bring a pile home from school every day.  He was writing rude words on his jotters and remarks about how boring the topic at school was.  He had a difficult school trip where he had to be supervised one to one as he was making inappropriate remarks.  He was also tearful on this trip.

It was nearing the end of term and myself and school thought he was just perhaps looking forward to the holidays.  We agreed to see how he was at the start P4 and review things then.

Update

Hi

I thought I should come back to my blog as friends and family intermittently ask about it and encourage me to write some more.  My last post was in January 2012.  I can't quite believe that it was that long ago!  A lot has happened to my little family in that 3 and a half years. We have moved house a few times, I had a long term partner which didn't work out and I met my current partner in late 2013.  He is amazing and for the purposes of this blog I will refer to him as my better half (BH). With my BH comes his Mum and his extended family who are a huge support to us.  We got a rescue dog four weeks ago too!

Many things have happened since 2012 and there are lots of things to write about and reflect upon in other posts.  I will try to go back and write about them in date order.

So, I'm back and will try to hang around this time :-)

Haircuts

When T1 was around 22 months old we took him for his first haircut.  It was a busy hairdressers and there was a queue.  He was restless waiting so by the time it was his turn he was quite agitated.  He started to cry and scream and we had waited so long that I instructed the male barber to just get on with it.  This meant  we had to practically hold T1 down whilst the barber sheared his hair off as quickly as possible.  This was the worst thing we could have done.  I wouldn't recommend forcing your child to have anything done if they are distressed.  Haircuts thereafter were a nightmare.  At this point we were unaware of T1 having ASD but thought that his reaction might be different to other children his age. He now seemed to have a phobia of haircuts and to add to this, he had sensory discomfort when his head was touched, especially lightly.  It seemed an impossible task but with his hair getting longer we needed to find a solution.

My solution was to buy my own set of clippers.  We bribed T1 for the first few haircuts.   He was sheared so his hair was very short but we couldn't get to the bits at the nape of his neck or round his ears to tidy them up as this was so uncomfortable for him.  He was still very uncomfortable but was at least in his own home.  We stuck with this for a couple of years and his little brother had the same haircut but actually loved having his hair cut.  A friend (who is an Occupational Therapist) suggested putting something heavy on T1's knees whilst he was having his hair cut.  This would help to centre him when he felt fiddly and offer different sensory input whilst he felt uncomfortable when doing the tickly bits round his ears.  This seemed to help and he was less distressed.  We took T2 to the hairdressers to have his hair cut and took T1 along just to watch.  T1 was now age 6.  By this time we had the ASD diagnosis and explained to the hairdresser how T1 felt uncomfortable.  This lady was brilliant and gave T1 time in the chair and some toys to play with.  Each time he accompanied T2 for a haircut he managed to have another bit done to his hair.  He still wasn't able to get his ears and neck bits tidied up but to sit in the chair was an achievement.  After a year of this and practicing at other hairdressers we felt we needed to try and get the neck and ear bits sorted out.  DP had the novel idea of getting his long hair cut short so that T1 could see him have it done and so that he could get his done next.  I was sceptical to say the least but this worked a treat and for the first time ever, at age 7, T1 sat and had a proper haircut with the tickly razor round his neck and ears and everything!  I'm ashamed to say that the journey to a successful haircut was solely led by DP.  I found it too difficult to see T1 upset in front of the queue of people at the barbers and felt that if I lost it then he would be more distressed.  I was also slightly haunted by that first experience too.  I have to admit that DP still takes T1 & 2 for their haircuts.  I must go and watch one day soon.  It'll be a proud moment.  I still wonder if that first experience meant our journey has been longer or whether it would have been like that anyway.  I learned a valuable lesson though... never to subject my son to something which caused so much distress.  It really wasn't worth it.

Primary 2

T1 entered his Primary 2 year with all of the other boys and girls in his class.  There were 15 of them in total.  They are a close knit class so it was lovely for them to be on their own as opposed to being in a composite class.  T1's P2 teacher was a really lovely lady who was due to retire after T1's P2 year.  This year at school went really well for T1.  He really achieved a lot.  Some of his achievements in this year were:

• Making closer friendships with his peers both in and out of the classroom
• Coping much better with school Sports Day
• Beginning to self regulate his emotions e.g. taking himself off for some quiet time in the book corner in class if he needed to (his teacher was very supportive of this and would encourage it as required but would also help to re-integrate T1 back into the class goings on once he had had a bit of space)
• The small class size allowed T1 to play games etc. with his peers and get some honest feedback from them which helped him modify his behaviour e.g. his friends said that he was laughing too loud so they didn't want him to play anymore.  This sounds harsh but he actually needed to hear that to think 'Mmmm perhaps I need to tone down the volume of my laughing so I can keep playing'.

After his first term in P2 we had another meeting with the Educational Psychologist, his class teacher and the Head Teacher.  The feedback was that T1 was doing really well and was making closer friendships.  They knew this because he joined in with others more in class and spent time playing with others in the playground.  His handwriting was improving and he was doing well at concentrating on his work when he knew what was going to come next.  At the end of this meeting we all decided that T1 didn't need formal Educational Psychology input anymore as there did not appear to be any issues in school that couldn't be worked out between DP and I and school staff. 

Also during this year, T1's friends expressed an interest in learning about ASD as T1 was beginning to say that that is why he finds some things difficult and why he is good at remembering things that he is interested in.  I got a hold of some books that I let others borrow for their children to read if they wanted to know more.  Particular favourites are:'Friends Learn About Tobin' and 'Tobin Learns To Make Friends', both by Diane Murrell.  I think these books are pitched well for ages 4-6.

At the end of his P2 year, T1 let me know that he didn't want to use his pencil grip anymore.  I could have insisted but I believe that it's his choice unless I think he is going to harm himself.  He was still happy to use his sloping board for writing and his disc-o-mat.  T1 was also discharged from the Child and Family Mental Health Service where he recieved his diagnosis.  We didn't have any concerns/difficulties that required such a specialist service.  We knew that we could be re-referred to be seen again via our GP if T1 needed it.

All in all T1 had a very happy year in P2.  I believe a lot of this was down to being in a small class with the children he has always known and having a very caring, compassionate teacher with oodles of experience :-)  I found this quote somewhere online and it sums up how I feel about my chats with  T1's P2 teacher...

'I may forget your name but I will recall in detail the way in which you spoke to me about my child - and most of all I will remember the compassion and realism you exhibited'.

 

The Birth

What can I say besides it was difficult... one of the most difficult experiences of my life.  I feel sad saying so given that most people regard the birth of their first child as the best day of their life.  It was a very long labour ending in lots of intervention because I was very unwell.  Turns out that T1 had an infection too.  My waters broke on a Tuesday night and T1 was born mid morning on the Friday.  Adding to that, there were several medical bits and pieces that went a bit wrong (or rather the small percentage of medical risk happened to me).  For example, I had too much spinal anaesthesia which paralysed me from my nose downwards which meant that whilst I was vomiting, I actually thought that I was going to choke and die.  I was so traumatised by this that I actually refused contact with T1 when he was born for about an hour or so.  Obviously I feel awful about this now.  I have no beautiful memories of his first cry or the first time that I looked into my baby boys eyes.  In fact, I had very little contact with T1 on his first day because I was so unwell and required lots of morphine and antibiotics.  T1 was taken to the Neonatal Unit about 12 hours after he was born.  I tried to go and see him but I haemorrhaged so had to stay in bed.  In the days that followed, I went down to the Neonatal Unit to feed him when called to do so.  I never just sat with him, spending time with him.  Was I bonding with him?  I'm not really sure.  He had to have lots of needles inserted into various parts of his body and about 5am one morning, a Doctor said 'you can stay to comfort him whilst we find a site for the cannula if you like'.  I politely declined and removed myself to sit outside whilst they did their job.  I think T1 was about 5 days old.  I remember sitting there listening to him crying.  And then something inside me clicked.  I must answer my baby boys cries and I got up and went in to be with T1.  I put my hand through the hole in the incubator and took hold of my baby boys little hand and stroked it gently.  He turned his head towards me, stopped crying and studied me with his beautiful blue eyes.  It was then and there that I became T1's mummy, there for him, no matter what. 

T1 had various tests including brains scans and lumbar punctures.  It was a difficult time.  He had various courses of antibiotics intravenously.  It has crossed my mind, very fleetingly, about what effect the medication could have had on his little brain.  Could this have made him more susceptible to having ASD?  But I know that there is no good evidence to support this idea.  I have also wondered whether a lack of a bond in the first few days of his life would have affected him having ASD.  But again, the sensible part of me knows that I did what I needed to do for survival at the time, albeit selfishly.  The main thing was that I did bond with T1 - my special blue-eyed boy :-)

Occupational Therapy Assessment

T1 had his Occupational Therapy (OT) assessment appointment a few weeks ago.  He recognised the hospital as the same place where he was told that he had Aspergers but I explained that we were there this time to see about his 'flexible joints'.  This is what T1 has chosen to call his difficulties with movement and low muscle tone.  We met a lovely OT who carried out her assessment over an hour and a half.  She did various standardised tests and then summarised by saying that T1 has hypermobility, low muscle tone and therefore will find writing, balance and other tasks very tiring.  She also recommended a few aids for us to try:

• Disc-o-mat - a rubbery, knobbly air filled cushion for T1 to sit on his chair at school or when he is sitting on the floor at school - the point of this being that it will give T1 sensory feedback as to where his body is in space without him having to wriggle about so much which will hopefully then help him to focus better on his work
• Wider handled cutlery - moulded plastic handles with finger holes so that T1's fingers don't slip off the cutlery when he is trying to grip them - he rarely uses a knife and fork just now so hopefully these will help
• Pencil grips - really knobbly ones with precise places for T1 to put his fingers with less chance of them slipping
• A writing slope (Posture Pack) - to encourage better posture when writing - at the moment, T1 is slouching over his workbook to have a close look at what he is writing because he has to put a lot of effort into it

The OT also did great work at getting key information from T1's teacher about how he is at school.  She also contacted the teacher directly following T1's assessment and informed her of her findings and how to use the recommended equipment correctly.  We now have most of the equipment that we need and it is going great.  T1 has now been discharged from the OT service.

The OT assessment really confirmed what I have known about T1's motor skills.  It was important to have the OT assessment though as he has accepted his Asperger's diagnosis without much difficulty but it is his difficulties with motor skills that affects his self-esteem because he can see so clearly that he is different from his peers.  For example, he was crying one night and when I asked what was the matter he said that he was the only person in his class who couldnt do a roly poly.  He seemed half upset and half frustrated that this was the case.  I am hoping that learning more about his 'flexibility' will help him to take ownership of it like he has the Aspergers diagnosis so that he knows that it is just another quirk of who he is.

To Label or Not...

Deciding on whether or not to have your child officially diagnosed with something is a bit of a controversial topic.  I guess every parent is different and will do what they feel is best in their circumstances.  DP and I have chosen to go down the road of having our son 'labelled' or diagnosed with a known disorder/syndrome.  Some of my reasoning in choosing to do so has come from the work that I do.  To be honest, it never really occurred to me NOT to have T1 officially diagnosed.  To me, if he had the 'label', this meant that he might identify with some of what he is going through. He could take ownership of it and learn about it.  I felt that the same would be true for people who knew and worked with him and our family. 

Another factor at play is that having the official label means that T1 has rights with regards to his education.  The Additional Support for Learning Act means that he can expect reasonable adjustments in the education setting to take account of his learning and development needs.  T1 has been very lucky in that he received support in Nursery and Primary 1 before a diagnosis was made.  Not all schools are that supportive pre-diagnosis.

When you recieve an official diagnosis, it confirms that, as you suspected, all is not well with your child.  Every fibre of your being wants to run away from that fact but DP and I felt that we owed it to T1 to deal with those feelings to get through the assessment process so that T1 may benefit in the long run.  It is a big responsibility as a parent to choose to have your child offically diagnosed and the decision has not gone past without some anxiety.  DP and I can only hope that T1 will think that we made the right decision in years to come.  Whether or not he chooses to use the label when he is older is his choice, but for now, we use it to get the best care and education we can for him.

Friends and People Who Know Us...

T1 is growing up in a rural village.  He has been part of a Parent and Baby group, 2's Group, Playgroup, School Nursery in this village and has started school with the same children he went to all these groups with.  I feel that this has been incredibly helpful to T1 and our family.

There are 15 children in T1's class at school and they all know him extremely well.  These children are exceptionally caring and thoughtful towards T1.  If he is feeling distressed or upset, they often draw him pictures of aeroplanes to calm him down or cheer him up.  Of course, T1 has his 'cross' days when he can get rather grumpy with the other children but most of them seem to cope with it and tell T1 straight when he is in the wrong, which is very helpful because this is how T1 will learn about social rules, as and when they happen and when he gets immediate feedback from the other children.

T1 got a folder of things to take home at the end of Primary 1.  In this folder there must have been at least 20 or so drawings of aeroplanes and flags from the other children in T1's class.  I felt tearful then looking at those drawings and I'm tearful now writing this because I know that T1 is so incredibly lucky growing up with these children who seem to care about him, understand him so well and cope around him whatever mood he's in!  I can't thank them all enough!

I am also thankful to the parents of the children in T1's class.  The majority of them have known T1 from when he was very young.  A lot of them will have done some parent duty at playgroup or nursery and will have perhaps noticed some of T1's differences.  They seem to have a really good understanding of T1 and are very supportive of DP and I.  At times I could be seen as being a bit over cautious with T1 e.g. not leaving him at parties alone because I wonder how he will cope.  Some of the other parents have encouraged me to leave him which has given me more confidence to do so in the future.  I feel really lucky to trust the other parents enough to know T1, to keep an eye on him and to contact me if I was needed.  If any of them are reading this now then let me say a huge thank you to you, your support has been invaluable :-)