The long Process

Hi,

We have written the following describing the majority of the process and situations we have been through over the last few years with our Son who has been diagnosed with autistic spectrum disorder. 

We have removed personal identifiers to protect him - originally we wrote this with names in and used a find and replace with (autisitic son). Please also note that we have published this before showing it to any of the agencies involved and therefore have not given them chance to reply to this before showing others. This is another reason we have avoided identifying services and people where possible.

The purpose of this is to show others some of the good and bad things that can occur personally and with the groups of people who can help throughout diagnosis and beyond.

Please forgive any spelling/grammatical errors.

Our son (autistic son) was born in 2008. At current date he is 7 years 6 months old. (autistic son) was diagnosed with autistic spectrum disorder  in April 2015. The purpose of this is to document our journey throughout those 7 and a half years.

SPEECH

We first noticed that (autistic son)’s development was different to his piers around the two year mark. At this time he had been later meeting his earlier milestones than most of his friends and was experiencing great difficulties with developing speech. The first time we voiced our concerns to a health care professional was at (autistic son)’s two year development review with one of the nursery nurses who worked with the health visitors at our GP practice. At this point (autistic son) was non-verbal and making very few speech-like noises. When we expressed our concerns the first response was to recheck in 6 months but we pushed for a referral to speech and language because we were aware that there was a six month wait for appointments and agreed that we would cancel the appointment if there was an improvement before that time.

We received a home visit assessment from a speech and language therapist in July 2010. We recall that the visit was useful, with the person informing us that there did appear to be issues with verbalising communication butthere was  good non-verbal communication and eye contact being made. We were told that any therapy for encouraging speech required any child to be over 3 and were asked to call back to them directly after the age of 3 if the issue was still there. This process of self referral was possible as we were now known to them and would be (and was) faster than re-referral.

(autistic son) started playgroup two mornings a week at Playgroup in September 2010. The necessity to communicate with unfamiliar adults and children encouraged him to increase his one-word vocabulary. We (his parents) had also taken advice from both the speech and language therapist who assessed (autistic son) and a friend who was a speech and language therapist on how we could help (autistic son) to develop his speech. We made our sentences when we were speaking to (autistic son)  shorter and simpler, we started actively encouraging (autistic son) to make speech sounds (asking questions for him to make verbal choices e.g. ‘do you want milk or juice?’, asking him what things were in books etc and praising any speech sound made) and we used the ‘plus one’ rule to encourage (autistic son) to put words together.

By April 2011 (autistic son)’s vocabulary had greatly increased and he was putting words together to form sentences. However,  there was now an issue with the clarity of his speech. (autistic son) was putting a hard ‘g’ sound in place of most constonants throughout his speech. For this reason we self-referred him back to speech and language. The self referral process was very straightforward and we received an appointment quite quickly. The appointment involved a very thorough assessment of (autistic son)’s speech and communication in a relaxed setting. The outcome of this assessment was that (autistic son) would be invited to a sound awareness group once he reached the appropriate age to attend and we were given loads of information on things to do to help in the meantime. The advice we recieved at this appointment was hugely helpful and enabled us to work with (autistic son) on his speech daily. We built asking (autistic son) what sounds words started and ended with into the walk to and from nursery everyday and parroting back what he’d said with the correct phonics became routine. In addition we worked on his phonic sounds with the aid of the jolly phonics CD and song book, also recommended by speech and language. It was immensely reassuring to feel that we were doing something to help while (autistic son) awaited formal speech and language support.  

In 2012 (autistic son) was invited to attend 11 one-to-one speech therapy sessions with a masters level student speech supervised by a language therapist at the university. (autistic son) enjoyed these sessions, we were given tasks and advice to help (autistic son) which we did daily (little and often). By the end of these sessions he was showing some marked improvement.

Shortly after these were complete, (autistic son) was brought back for small group sessions which progressed to in-school sessions.

Throughout all of his time in speech and language therapy (from the point of them receiving his referral), we were given helpful advice and tasks to help (autistic son).

(autistic son) responded well to speech therapy and gradually his speech became clearer and more easily understood. He used to say ‘gee’ for mammy, I noticed it became ‘googie’ but missed the first time he said ‘mammy’ until his gran pointed it out because his speech was progressing so fast at this point. When we looked back of videos of (autistic son) at age 3 and 4 now we amazed and proud that he has progressed from that to the clear, coherent speech he has now.

(autistic son) was discharged from the speech and language service in July 2014 due to the progress he had made. At this time his speech and language therapist attended a review at the school discussing wider issues with (autistic son)’s behaviours. Due to what was discussed at this meeting and her assessment of (autistic son)’s speech and understanding (autistic son) was referred to the social communication teacher at SENTASS. This was because (autistic son)’s remaining issues were with social interaction and understanding emotions.

In summer 2015 we referred (autistic son) back to speech and language due to a worsening of his stammer, which was more noticeable at school than at home. He was assessed by two stammer specialists from the speech and language service who gave us helpful advice on how to help him with his stammer. In agreement with them we decided against active intervention due to his own lack of awareness of his stammer.

TOILET TRAINING

Following standard advice we started testing (autistic son) for using the potty shortly after his second birthday. We would take him out of nappies and regularly put him on the potty for two consecutive days every month. When he showed no interest or understanding we would put him back in nappies and try again the next month. This went on for a year. Due to our younger son being due to be born at the end of June 2011 and (autistic son) being due to start nursery in September 2011 we decided to go for the potty training anyway just after his 3^rd birthday. We put (autistic son) into pants during the day and regularly sat him on the potty. We left him in nappies at night.

(autistic son) showed no awareness of soiling or wetting over the next 8 months. He was engaged with the process of potty training and wanted to produce urine and stool in the potty but he would look in the potty when he stood up to see if he had done anything. It was heartbreaking at times to see his little face fall when he realised he hadn’t done a wee. He would often go more than four hours without urinating and then soak himself. When (autistic son) started nursery in September 2011, we put him in pull-ups for nursery because we had been cleaning up several wee and poo accidents a day and did not want to pass this burden on to nursery staff.  (autistic son) told nursery staff that he wanted to wear pants in nursery in November 2011. We then went back to keeping him in pants all day. He often soiled and wet at nursery, we had to send in 2 spare pairs of clothes for a 3 hour session, and he very rarely produced anything in the toilet there. Out of desperation we took him out of nappies at night too, thinking it might reduce confusion. We would lift (autistic son) out of bed and put him on the toilet in the middle of the night every night which he tolerated very well and would void well and go back to sleep. This stopped on community nurses advice when he was around 5 and a half to reduce associating urination with the time of day. He very quickly became dry at night but this did not transfer to the day time.

 We talked to the health visitor before (autistic son) was 4 years old who gave us some advice which matched the advice we had been following for a year at that point. (autistic son) was tested for urine infection (negative) and passed over to the GP who referred (autistic son) to a paediatrician at oir local hospital.

(autistic son) then joined reception at 4 years old and continued to show no awareness but started gradually to release urine on demand. After several soiling incidents at school (autistic son) developed anxiety around pooing, which led to a reduction in stooling to two or three times a week and constipation. (autistic son) did not see a consultant paediatrician on his first visit, seeing one of the registrars. Under this specialist advice, (autistic son) was started on laxative medication and referred to the community nurses for advice who in turn referred back to the health visitors due to (autistic son)’s age. The health visitor returned and gave us the same advice we had received from them previously which we had already been following for 2 years at this point.

From 2012 to 2014 we saw several different registrars under the consultant paediatrician at the hospital (never the same one twice). Once (autistic son) reached 5 years we were referred back to the community nursing team and got some very helpful advice on ways to gets him to release poo e.g. correct sitting position, timing, rock and plop, blowing games and routine setting. A nurse  from the community nursing team visited us a home a few times then we came to an agreement (which was more convenient to us) where she would ring once a month to see how we were doing and offer new advice and support.

 After many visits to the hospital meeting a different registrar each time, we finally met the consultant paediatrician in early 2014. The consultant had wanted to see (autistic son) herself as his continued lack of awareness of his bowel and bladder function at this point was unusual. At this point (autistic son) was having far fewer accidents, both at home and at school, but when he did soil or wet he still didn’t show any awareness of this having happened and would happily sit in wet and/or soiled clothes with no apparent knowledge of this. Prior to seeing the consultant on this occasion we had a few bad weeks with (autistic son)’s toileting due to communication issues at school whereby (autistic son) was going into the toilets at school and washing his hands but not actually sitting on the toilet. The consultant wrote to the school to highlight the importance of ensuring (autistic son) sat on the toilet regularly at school and also recommended that we re-introduced the Wobl watch (vibrating reminder watch) which we had tried at an earlier point (as a result of advice from ERIC – the incontinence charity helpline). She also contacted Chris Harrison (community nurse) to see if there was anything else they could do to help (autistic son) with his awareness. The comunty nursing team got their playworker  involved to try and increase (autistic son)’s awareness of his bodily needs through play therapy. Jo visited us at home to explain what she was going to do and then had several sessions with (autistic son) at school. (autistic son) was very engaged in these sessions and learned lots about how his body worked, but unfortunately it led to no improvement in his awareness and indeed led to some confusion, where (autistic son) was expecting some magical ‘signal’ from his brain that never came in the way he expected (we have come to find with (autistic son) that metaphorical teaching is taken quite literally by him so can often be confusing).

(autistic son) became more engaged with his Wobl watch and through toileting by routine we eliminated accidents except in times of anxiety or change.

In June 2014 we had a big meeting about all of (autistic son)’s difficulties with the school. As a result his consultant was asked to refer (autistic son) to CYPs (children and young peoples service) for assessment which she did promptly in July 2014.

 On the second occasion the consultant met (autistic son) (September 2014) the likelihood of ASD was raised and the possibility this was more likely to be the cause of any toileting issues.

We saw the consultant for a final time in March 2015. At this point we were reducing (autistic son)’s laxatives as his anxiety over toileting had reduced and he had a good toileting routine in place. We were also very close to a diagnosis of ASD. In this meeting we discussed how (autistic son)’s toileting was actually very good for a child with ASD and how any further progress was unlikely due to his sensory processing difficulties.  (autistic son) was discharged from the consultant paediatricians care with our agreement.

(autistic son) currently toilets on a schedule:

On waking and before retiring

Throughout the day in school he uses his Wobl watch and is prompted by staff at natural breaks etc lunch/break times

At home, he is prompted every couple of hours or prior to leaving a place/getting to a place

(autistic son) no longer uses laxative medication; these were useful over the time he used them to allow his bowel to recover from the extreme constipation he has been struggling with but are no longer required

BEHAVIOUR

In (autistic son)’s early life, we had no issues with his behaviour, he was a friendly, relaxed toddler with the positive and negative behaviours you would expect from a toddler. The only real difference we noticed between him and other children at this age was that he became restless and upset if we didn’t leave the house. He also stopped having a nap most days at 13 months (he tended to have one nap a week after this point). Consequently we took him to toddler groups or classes every day to keep him settled.

The first real issues with (autistic son)’s behaviour started after his younger brother was born in June 2011. At this point he was attending Playgroup three mornings per week. There had been no issues with his behaviour in that setting up until this point but after (younger son) was born we had reports of violence (biting, hitting and pushing) toward other children after every session. We were also told that he had become very bad at sharing. At home (autistic son) was very loving towards his brother and showed no violence towards him but started to have more intense screaming fits/tantrums when asked to do something he didn’t want to. We managed this behaviour using the naughty step technique and confiscating toys but (autistic son) seemed to have little understanding of the consequences of his actions, despite being given three warnings before a consequence was carried out.

(autistic son) started 5 mornings a week at nursery in September 2011. Nursery approached us after one month to ask if there had been issues with his behaviour before starting as they were issues with sharing and biting again. We found (autistic son) was struggling with transition times at this point e.g. he didn’t want to leave the house to go to nursery in the morning and was upset about leaving nursery at lunchtime and wanted to go back into nursery. (autistic son) also struggled with changes to routine in school holidays. We started using a reward chart as well as the naughty step to help with his behaviour but again (autistic son) seemed to lack understanding of consequences and be ‘unreachable’ at times.

We noticed a connection between (autistic son)’s behaviour and toileting issues and mentioned this to the registrar paediatricians we were seeing at the RVI. Often (autistic son) had prolonged and aggressive tantrums followed by wetting and or soiling.

(autistic son) started in the reception class at grange first school in September 2012. There were issues from the start with behaviour, concentration and toileting. (autistic son) was registered as having special education needs and given an appointment for a longer special needs review instead of the usual five minute parents evening appointment. In these appointments school expressed concerns over (autistic son)’s toileting issues, difficulties communicating, poor concentration on tasks, poor motor skills and difficulties sharing and making friends. (autistic son)’s behavioural issues at home continued to be around toileting and transition times. In particular, we had massive issues with getting him ready and going to school in the morning. He also started sleepwalking for up to 8 hours per night and displaying aggressive and self-harm behaviour while sleepwalking.

We found the summer holiday between reception and year one (2013) particularly challenging. (autistic son)’s behaviour was very difficult when we were out of the house, he ran away from us a few times and would lash and out and/or hide when it was time to leave places.  He became very aggressive towards his younger brother (younger son) and actually broke his Mam’s rib when she was protecting (younger son) from being squashed by (autistic son).

In September 2013 at a routine appointment with a registrar at the consultant paediatrician’s  clinic, Dad  broke down and told the registrar just how difficult we were finding (autistic son)’s behaviour and that we were at breaking point and didn’t know what to do. The registrar discussed our concerns with the consultant, who recommended an increase in (autistic son)’s laxative doses (due to the connection between toileting and behaviour) and wrote to the school to get their opinion before taking any further action.

In September 2013 (autistic son) had started year one with a new class teacher and a new LSA. We had (autistic son)’s special needs review in November 2013 and were told in this meeting that (autistic son) had taken very well to the structure in year one and no longer had issues with behaviour, toileting or communication. At this meeting we expressed our concerns that this was not what we were seeing at home. In fact things had got worse for us since he had started year one. We were having major issues getting to and from school and doing homework.  We told school about the broken rib incident over the school holidays, the response to this was it had happened before the start of year one. It was decided in this meeting that (autistic son) didn’t need special needs reviews anymore and the letter sent from school in response to the letter from the registrars was that there were no issues in school except mild concentration issues. In response to our concerns we were told by the class teacher that a lot of parents expressed they had behavioural issues at home that they didn’t see in school because of the structure of the school environment. At the end of the meeting Mam  asked if they could tell us where to get help as we couldn’t continue the way we were at home. The SENCO suggested we contact the parent support officer at the school but didn’t have her number so advised us to get it off the school website. The parent support officer’s contact details weren’t actually on the website and it took us a few months to get the number off the school so we finally contacted her in January 2014. Eddy had a meeting with the parent support officer to discuss (autistic son)’s behaviour and what we could do to help. During this meeting, Dad discussed the behaviours being displayed and strategies that had been attempted to manage and support (autistic son). The Parent Support Officer informed Dad that there was nothing extra they could add to these strategies. Although this was frustrating, there was an element of knowing that we were actively trying all the possible things she would usually suggest. The outcome of the meeting was that she would look into more specialised parenting support and arrange to observe (autistic son) in school. We were unable to attend the parenting classes suggested due to them being during the day on a day we both worked. Mam completed on online parenting class instead.

At the consultant paediatrician’s clinic in December,  Mam  spoke to the registrar about (autistic son)’s behaviour. The outcome of this discussion was that because school weren’t reporting any issues and we were seeking parenting support there was no need for any further investigation.

In March 2014, (autistic son) got a new teacher and around the same time the parent support officer went into his class to observe him and talk to teaching staff. At this time it emerged that (autistic son) had been having and was still having problems at school. His teacher and LSA reported that (autistic son) struggled to complete tasks, struggled to interact with his peers, often closed himself off, had a habit of hiding under his table and could be inappropriately physical with both his peers and teachers. His teacher recommended that he went back to having special needs reviews in May 2014.

We had a big special needs review and meeting to decide the next course of action at school in June 2014. (autistic son)’s speech and language therapist, class teacher and the school SENCO attended along with both of us. At this point it was decided to refer (autistic son) to CYPs (Children and Young People’s service) for further investigation.

Meanwhile (autistic son)’s behaviour was deteriorating at home and at school. He was becoming prone to more and more violent outbursts in both settings. School reported incidents of hitting and pushing his LSA when she tried to get him to complete tasks he was reluctant to. He also had some incidents of violence towards children in the playground and frightened other children by hugging then too enthusiastically. At home there was escalating violence towards us and his younger brother. It was also becoming harder to manage his behaviour outside of the house, especially on the way to and from school.  

One particularly bad incident occurred on a Monday afternoon when Mam picked (autistic son) up from school towards the end of the summer term. (autistic son) got upset about leaving school and wanted to go to the local soft play. Earlier in the year we had been going there after school on the day mam was off work but had stopped due to (autistic son)’s unpredictable behaviour there. On this day (autistic son) asserted that we always went there on Mondays and got very angry when told we were not going. (autistic son) was given the choice of painting or baking when we got home but this did not calm him down. He hit out at his Mam and his brother so his Mam had to grip his hand tightly to walk him home. He tried on several occasions to push his brother (on his smart-trike) into the road and on the last of these occasions took advantage of his Mam loosening her grip on his hand to rescue his brother to run away. (autistic son) tore off in the opposite direction to home, ignored shouts to stop and ran across two roads with no regard for his own safety. Mam and (younger son) caught up with him when he was distracted by looking at duck on a stream and then had to drag him all the way home kicking and screaming. Mam told (autistic son) that the consequence of his actions was that he would go straight to bed when he got home. When his younger brother tried to check that he wasn’t also going straight to bed, (autistic son) got very angry and out his hand over (younger son)’s mouth and nose to stop him talking. Mam immediately removed (autistic son)’s hand and tried to explain the seriousness of what he had done. (autistic son) failed to understand these consequences.

On the first day of the summer holidays mam took both boys to our local Park. The boys played on the playground, played with a ball on the grass and had a picnic from Sainsburys. The problem came when it was time to leave. Both boys were given a countdown and promised a treat when they got home. (autistic son) ran away after we had left the playground and ran back into the playground and hid at the top of the climbing frame. Mam had to climb up and carry him down. On the way home (autistic son) kept hitting his Mam to break free of her grip then run away with no regard for his own safety. At one point Mam thought she had lost him altogether as he ran through a subway under a busy road and by the time she carried (younger son) through (autistic son) was nowhere to be seen. Luckily a bus driver stopped him from boarding his bus and Mam and (younger son) caught up with him then. Out of desperation Mam  carried both boys to ASDA and called a taxi home. He then had a two hour screaming and hitting tantrum at home.

Up until this point, Dad had always taken both boys out on a Saturday morning – usually to centre for life/Hancock museum or similar. During this summer, with (autistic son)’s erratic behaviour it became impossible to keep on going out. We would do activities at home instead.

We had some interactions with CYPs over the phone during this period (with their team when in crisis mostly) and we were given some helpful advice regarding having a calm down bag, visual aids and schedules. These discussions would be during crisis with whoever was on call. Every time we would call we would explain that we were feeling like we weren’t coping at all and needed more help. These interactions were extremely helpful in crisis – we did feel that some, if not all, of the methods discussed could have been presented to us in some form before needing them in crisis.

Mam was told by CYPs that, without a diagnosis, the best option was to treat (autistic son) like a much younger child e.g. restrict punishments for behaviour, use simpler language and use distraction techniques. This helped a little.

Getting (autistic son) to school in year 2 was even harder than in year 1.  He was very reluctant to go to school in the morning. He would scream and shout repeatedly that he didn’t want to go to school, that he hated school, that he wanted to go back to bed and that he hated us for making him go to school. He refused to even try to get dressed, we had to dress him and even then he often removed his clothes and hid his shoes, coats etc to try to stop us taking him to school. It was not unusual for him to refuse to eat breakfast either. (autistic son) often tried to hide or pretended to be asleep when it was time to leave for school. Walking (autistic son) to school became increasingly difficult also. He would refuse to walk or lie down on the path and run off with no regard for his own safety. He frequently panicked when getting to the school grounds and would try to run all the way to the yard without waiting for us to catch up. Dad being physically stronger was able to manage this with a firm grip on (autistic son)’s hand or wrist. Mam started using a wrist strap for safety after one morning when (autistic son) ran off across two roads without looking and she and (younger son) only caught up with him after a mile when he stopped to watch golfers at the golf course. (autistic son) was also very violent towards us when trying to avoid going to school. Mam sustained several injuries including an intestinal bleed, damage to her knee and cracked ribs. We both had to buy new glasses after (autistic son) broke them in anger.  From October to December, dad was doing a course at  University which meant that mam had to get both boys to breakfast club before going to work once a week. This day mam found particularly hard and for the last few weeks of this mam’s Dad  stayed over to help get the boys ready on this day.  We began to notice that (autistic son)’s violent outbursts were often connected with transitions, busy places, noises and changes to routine.

In November 2014 mam attended a meeting at the school with the school SENCO, the social communication teacher from SENTASS and the educational psychologist. At this meeting we discussed how a lot of (autistic son)’s behavioural issues stemmed from anxiety. Mam had another meeting with the school SENCO to discuss using stories to help (autistic son) deal with his anxiety. We also completed a five point scale for (autistic son) which was very useful in discerning the warning signs before (autistic son) got to a full meltdown situation. We read the Panicosaurus with (autistic son) and also read the strategies suggested for parents or teachers in the back of the book.  Discussing this with (autistic son) led to us identifying specific anxiety triggers he had. We introduced a feelings fan at home and school for (autistic son) to express to us when he was starting to get anxious. At home (autistic son) indentified noise (from (younger son), the metro, washing machine), leaving places, bedtime and a change in plans as triggers. At school (autistic son) identified lining up, playtime, home time and assembly as triggers. School helped (autistic son) to identify safe places he could go at playtime, in the classroom and in assembly and allowed (autistic son) to go straight to the teacher instead of lining up. We also started taking (autistic son) out of school via the main entrance avoiding the yard and dining room which were often noisy, busy and chaotic. These measures led to a decrease in (autistic son)’s anxiety and violent behaviours and for the first time in over two years we felt like we understood (autistic son) and were able to help him. We did still have one bad incident in late November when (autistic son) was woken up by (younger son) crying at night and tried to shut him up sitting on (younger son)’s chest with his hands over his mouth and nose. Sarah woke up and removed (autistic son) but she had to take (younger son) to the walk in centre as he seemed distressed. Fortunately, he had only suffered some bruises to his chest and was fine otherwise. This incident led to a follow up call from the school nurse to check that (autistic son) had been referred to CYPs and we were getting support for his behaviour.

We later started to take (autistic son) into school through the front entrance and spent time in the school library before school, this reduced anxiety going into school a lot.

During early 2015, (autistic son) started having some extra help in school, he would have an LSA with him (sometimes with another child also) for half the day. This helped him be calmer when leaving school and he was able to get more work done outside of the classroom environment.

By using methods such as the calm down bag, distraction, the feelings fan, identifying and avoiding triggers and using techniques in books such as the ‘the panicosaurus’ and ‘the red beast’, using a timer for countdowns, using visual symbols and timetables and recognising signs of his anxiety earlier we were able to help (autistic son) to manage his behaviour much better. We saw a decrease in meltdowns with us  from 3-4 per day to 1 per day term time and less out of school. Unfortunately after 4 months of calm, we saw an increase in (autistic son)’s anxiety and difficult behaviour when he went back to school after the easter holidays 2014. This was later attributed to his class doing SATS. There were several incidents at school during this time, including two incidents on school trips where (autistic son) completely melted down.

After (autistic son)’s diagnosis in April 2014, one of the things we looked at doing was getting some extra support for situations where there was one parent in charge of both children outside of the home. Over the previous 12-18 months it had become more obvious to us that (autistic son) needed one to one support while we were out of the house. Therefore, we hired a care agency (CIC) for periods over the summer holidays in order to allow us to go out places with (autistic son). On some of these outings (autistic son) did have meltdowns but having an extra person allowed us to mange this better and ensure (younger son) wasn’t left out.  The agency were very good at understanding  what our and (autistic son)s needs were and listening to what we wanted. They were flexible enough that we could book what we could afford when we needed it.

Our family holiday in 2015 was going to Edingburgh by train with Mam’s mam and dad and staying in an apartment. Although we had made alot of preparations to reduce (autistic son)’s anxiety, he really struggled with this holiday. We had arranged to have our evening meals and breakfasts in the apartment which worked well but (autistic son) struggled at lunch times when we tried to eat out. He struggled at the zoo and dad had to leave early and take him back to the apartment. He struggled at the national museum of Scotland (which he had loved the previous year) because part of it was closed for refurbishment so the open parts were busier. He struggled at dynamic earth because he didn’t fully understand that he couldn’t go back into it and because the cafe was too noisy and busy for him. He wanted to go on the tram to airport and mam and mam’s dad took him. He had a lovely time on the tram to the airport and looking around the airport but then completely melted down when asked to go the toilet at the airport. After that he kept trying to run away, trying to get off the tram by himself and every stop and was very angry and tried to run away whilst walking back to the apartment. He also bit his granddads hand. The best times we had were at the botanical gardens where he had quiet and space to explore and run off some energy. He did not manage to sleep in his own bed any of the 4 nights we stayed there, he made a bed on the floor of his gran and granddads room between their wardrobe and a pouffe and slept there instead.

During summer 2015, (autistic son) developed a habit of biting things (himself, his clothes, other people, furniture, whatever was to hand). It appeared to start when he had a new tooth coming through and then developed into a nervous habit. It became so bad that to stop him hurting himself and others and damaging his teeth we introduced chew toys which allowed him to manage the habit in a safer way.

In October 2015, (autistic son) transferred schools to the ARC (additionally resourced centre) for children with communication difficulties at  a mainsteam Primary School. (autistic son) transitioned very well to this new school and although he still has some difficulty transition from night time to morning most of the difficulties we had with (autistic son)’s anxiety over going to school completely stopped. He is now happy and relaxed as he goes to school.

In autumn 2015 mam attended autism-specific  parenting classes providing by CYPs. Although a lot of the information in these classes we already had gained from other sources we did gain some extra insight into the difficulties (autistic son) would face and how to help him. It was also useful and reassuring to talk to other parents of children with recent ASD diagnoses.

In July 2015 a CAF was set up in school, in September this was switched to a personal budget through the social work team. After some helpful meetings with the children with disabilities early intervention team, we were allocated a social worker for (autistic son). We are currently working towards employing a personal assistant to help us take (autistic son) to social settings outside of the house.

(autistic son)’s behaviour is still unpredictable at times and he is still prone to violent and aggressive outburst when he is anxious, disappointed, angry, confused or overwhelmed by sensory input .(autistic son) still has limited understanding of his own safety when anxious and still may try to self harm (bang his head against things) and put himself in danger (running away) when he panics. However we now feel better equipped to deal with these outbursts and better able to avoid and manage trigger situations.

EDUCATION AND DEVELOPMENT

(autistic son) was late meeting all of his early milestones, but with exception of speech and toileting (discussed above) not late enough to ring alarm bells to the outside world. We as parents can admit that we had concerns very early on about his development in relations to his friends of similar age. He commando crawled for 7 months before going up on all fours and only started to cruise a few weeks before he stood up and walked. We had immense difficulty getting (autistic son) to eat solid food and resorted in the end to getting up very early in the morning (4-5am) to give him solid food for breakfast before he had any breast milk.

Once (autistic son)’s speech difficulties started to resolve it became clear he was a bright boy with an enquiring mind. However at school he had difficulties expressing that due his delayed speech and profound difficulties with both gross and fine motor skills.

(autistic son) started school completely unable to dress and undress himself and also unable to do associated tasks with toileting e.g. bum-wiping, handwashing without help.

(autistic son) did not settle on a hand for writing and drawing until well into year one when he picked his left hand, until then he would alternate hands at random. He struggled with correct pencil grip until Dec 2014 when he was in year 2. He was referred to occupational therapy in 2014. (autistic son) did not co-operate with the OT assessment and subsequently he results came out as well below average for his age. We were given exercises to complete with (autistic son) to help both his gross and fine motor skills

During year 1 at school (autistic son) became very reluctant to write at school and this quickly progressed to home as well. Getting (autistic son) to write his weekly spelling homework form school became a complete nightmare taking up to 2 hours to get him to write a short list of words out 3 times. When we mentioned this at the big meeting we had with school in June 2014 it was suggested that we split it up and did one spelling a night. What didn’t seem to be understood was that up to 100 minutes of the two hours was spent persuading (autistic son) to pick up the pencil and write, were we to do one per night it would have taken nearly 2 hours every night rather than 2 hours once per week. We hired a tutor once a week for (autistic son) to help encourage him to write, cut and draw to improve his fine motor skills from May 2014 to December 2014. (autistic son)’s tutor was a teacher who worked with teenagers with special needs and we were amazed by the amount of writing and drawing he could get (autistic son) to do by focussing on things (autistic son) was interested in.

He found it difficult to work alongside others (often retreating under the table during year 1 and year 2) and school set him up a screened individual workstation in June 2014 which helped him to get more work done. We were frequently told by school that his ability far exceeded what he was recording. At the planning meeting for (autistic son)’s EHCP in June 2015, his class teacher told the meeting that his current achievement levels were at least two levels below what he was capable of in numeracy and writing, mostly due to his reluctance and poor ability to record.

In year 2 (autistic son) became obsessed with ‘literacy’ and often gave his reason for not wanting to go to school as ‘I hate literacy’. He refused to write at all and we started to scribe his homework for him at the schools SENCO’s suggestion. Any suggestion of him writing would lead to him shutting down or lashing out and eventually the education psychologist suggested we and school stopped asking him to write for a while and offered him alternatives such as a computer or a scribe for recording. When (autistic son) started at the ARC he was able to start writing again in their structured and supportive environment. He writing improved from a level 1b to 2c in 6 weeks of being there.

(autistic son) struggled with the blending part of learning to read by phonics, not mastering this until Christmas in year 1. He was able to read very well by memory though and could recognise some words before he started reception. Since he learned to blend sounds, (autistic son) discovered a joy in learning to read. He progressed very quickly and reading was often a solace for him in a world he found increasingly confusing. Throughout year 2, school often used books as a treat or to help him calm down when he approached or reached crisis and we read books in the library in the morning to calm him down ready for school. (autistic son) struggled with the emotional understanding of fiction books that were age appropriate however and preferred to read non-fiction most of the time. He still does, although he has recently developed a love of the puddle lane books, which we believe is because the stories are aimed a younger age group but he finds them challenging enough because he reads the parts designed for adults to read as well as the shorter sentences intended for the children to read. (autistic son) particularly loves the ‘quest’ series of books in which you have to answer questions about a topic to progress through the story. These books have averted a crisis many times.

(autistic son)’s mathematical ability has always been good but he struggles to explain how he worked something out. At home he prefers to use a physical prop, e.g. counters, coins or his base ten set to help with maths questions. Again his maths ability at school has improved greatly since moving to the arc.

In January 2015, we were asked to attend a meeting at (autistic son)’s mainstream school to discuss difficulties he’d had since coming back after Christmas. When mum went to the meeting she was surprised that the headteacher was there and even more surprised when the meeting went on to discuss alternative schools for (autistic son) as this had never been mentioned before. It was discussed that (autistic son) was not managing in the classroom environment and was spending more and more time in the headteachers office for the safety of him and the other children. The SENCO explained that they were applying for top-up funding to get (autistic son) 1:1 support but the headteacher made clear that he considered this a temporary solution as he felt this would meet his safety and emotional needs but they would not be able to deliver the education he deserved as he would be segregated from the class and the teacher most of the time. He suggested we looked at ARCs (additionally resourced centres) and the local autism-specific school. The school offered support in arranging and going on visits to these schools. The headteacher also said that until somethi ng was sorted there may be times we’d be called and asked to take (autistic son) home, as he would not always be available to watch him when he wasn’t coping in the classroom. Mum discussed at this point flexi-schooling but this was met negatively by the head teacher as he said he would still have responsibility for (autistic son) when he was out of school. He said it may be possible to have some educated off-sites days on an ad-hoc basis if it was for an activity specific to (autistic son)’s needs for example visiting a local activity centre for children and adults with disabilities (the Alan Shearer Centre), at times when we knew in advance (autistic son) would struggle e.g. sports day.

(autistic son) started to receive one to one support in the afternoons from an LSA in March 2015. He spent most of his afternoons with her outside of the classroom but he was calmer and completing more work. For the four weeks that he was in his mainstream school in year 3 (autistic son) had fulltime 1:1 support, he seemed much happier but was still struggling to complete work and spent a lot of time outside of the classroom.

We visited the suitable alternatives. At all visits the staff were extremely helpful and we were overwhelmed by the support and understanding (autistic son) could be getting in a more specialist setting. We were impressed by the dedication shown by the staff we met. Parent partnership was very helpful to us at this time, giving great advice on what to look for, think about and ask on visits. As a result of these visits and (autistic son)’s decline at school we decided to pursue a place in an ARC. The school’s SENCO was extremely helpful and supportive and submitted the application to the ARC panel as soon as we received (autistic son)’s diagnostic letter. Our initial application was rejected as there were no ARC places currently available and we were advised to complete the EHCP process before reapplying as this would give more evidence to our application. The EHCP process was long but our contact at the council was very helpful and understanding, the timetable was very clear and the process was completed in less than the allocated time. Independent support were very helpful once we received the report to help us understand it and advice us on what to do next. Before we submitted our response to the EHCP the council informed us (autistic son)  had a place at an ARC if we specified that on the EHCP. We did so and after 3 visits to the ARC (autistic son) started there 2 weeks before the October half term in year 3. Sending him there has made a huge difference to (autistic son) and it was obviously the right thing to do for his education. However, it is logistically difficult having 2 children in schools nearly 6 miles apart that start and finish at the same time and it also sad that our boys only got to be in the same school together for 4 weeks. Our younger son was very sad that his brother left his school. (autistic son) gets free transport to school but the drop-off and pick up times are inflexible and don’t allow us enough time to manage the drop-off and pick up times for our younger son. Initially we had to put our younger son in breakfast club 5 days a week and bring him home in taxi in order to fit around the transport times. In February 2016 mum started a new job which allows her to drop (autistic son) into school  4 days a week which allows dad to walk our younger son into school again. It is still necessary for Dad to get a taxi back from school with (autistic son)’s younger brother to get there in time for his return from school. Concerns regarding the rather large monetary cost this was placing on us as a family were raised with the council SEN transport team but they disregarded and ignored these concerns – failing entirely to comment on them or reply to correspondence regarding this.

EMOTIONAL DEVELOPMENT, SOCIAL COMMUNICATION AND FRIENDSHIPS

As a baby, (autistic son) was not fussy about who held him as long as he had a cuddle and he had smiles for everyone.

As a toddler we started to notice differences in the way (autistic son) interacted with other children. He desperately wanted everyone to be his friend and craved interaction with others but he wasn’t good at maintaining that interaction. He had at one point a habit of approaching other children sideways rather than face on. He was very generous with sharing snacks but very reluctant to share toys, especially train sets and building blocks. This was because he often had elaborate plans of what he wanted to build and couldn’t tolerate anyone interrupting these plans. This did lead to violence towards other children e.g. biting, pushing, hitting. (autistic son) relied heavily on non-verbal communication even after he started to speak and often inappropriately hugged, pushed or dragged other children in an attempt to communicate. (autistic son) was unusually receptive to strangers and would hug people he had never met before.

When (autistic son) was two, mum became pregnant with (autistic son)’s younger brother, (younger son). We introduced (autistic son) to the concept that his baby brother was in Mammy’s tummy once the baby bump became evident. (autistic son) was very excited about his baby brother and hugged and kissed the bump. When (younger son) was born (autistic son) was very loving towards his brother, hugging and kissing him and helping to get things ready for his nappy change.

As (autistic son) got older the gap between him and his peers became more and more evident. He struggled to maintain conversations (following his own agenda), was over-dependent on non-verbal communication, displayed inappropriate affection (e.g. overenthusiastic hugs) and could not understand the rules of games that they were playing. This led (autistic son) to become withdrawn and/or violent in social situations. On one occasion some girls in (autistic son)’s class tricked him into bullying younger children by pretending it was a game. (autistic son)’s eye contact was inappropriate, alternating between fleeting and staring.

We noticed that (autistic son) was more comfortable playing with younger children and that him and (younger son) were often on the same level socially despite the three-year gap between them.

(autistic son) was always more comfortable with constructive logical play (e.g. blocks, lego, trainsets, jigsaws) than imaginative play. As (younger son) got older he encouraged (autistic son) to play imaginative games but this was always at (younger son)’s lead.

(autistic son) continued to approach strangers with familiarity and this led us to be concerned for his safety at times. At the assessment sessions he attended as part of the diagnostic process he told one of the occupational therapist that he loved her.

(autistic son) stills struggles with conversations, social norms and imaginative play. He gets a lot of support in his new school and from us. (younger son) often helps him to interact with other children by initiating conversations and games.

(autistic son) attended an afterschool football club since reception. We initially stayed with him due to his inability to toilet and get changed. After a while the gentleman who ran the franchise advised us that that was not appropriate so we started coming in to get him changed then coming back at the end of the session. (autistic son) enjoyed the club but struggled to understand the rules, very often he was running around in circle nowhere near the ball. He attended a few holiday courses ran by the same coaching group but in Summer 2014 he was booked in for full days and after the second day we were asked to pick him up at lunch time instead because he had lay down at the side of the pitch pretending to snore for some of the afternoon. In January 2015 we were asked not to bring him back to the afterschool club as they had concerns for the safety of the other children due to his erratic behaviour.  At this point we started to look into special needs groups where he would be more accepted.

Mum contacted sports connect and arts and dance connect to find alternative classes for (autistic son). (autistic son) started going to sports club on Monday evenings for children which additional needs. At first this worked well as there were only 2 or 3 children there each week, the class was flexible and (autistic son) had nearly one to one support but as the class grew bigger (autistic son) became less able to cope with the noise level ad mum had to pick him up early more than once. Eventually he became so anxious about attending that we stopped taking him.

We also started going to Art Garden at Scotswood community Garden every other Saturday. This group suited (autistic son) really well as he could have the freedom to explore the garden, relax in the hammocks and the art activities are short and well structured. Sometimes he will join in the activities and sometimes he won’t but he always has fun. He also went to a special needs dance class at dance city which was on 4 times a year. He loved this as it was relaxed, a small class and dad accompanied him.

We found great solace in the Tim Lamb centre, a play centre for children with additional needs. It was wonderful to be somewhere where people weren’t judging us for (autistic son)’s difficult and unusual behaviours and (autistic son) was much more relaxed there than the park or traditional soft plays. We regularly visit the centre now and don’t know what we would do without it.

(autistic son) likes to follow a set routine and struggles with changes to that routine such as school holidays and school trips. Things that other children look forward to often make (autistic son) anxious.

SENSORY  ISSUES

At the point of writing this, (autistic son)’s sensory needs are the most prominent symptoms of his Autism that he experiences. Over several years we have developed a crude understanding of these, as we realise one issue is there and try to put in measures to manage this, another often becomes apparent.

The first time we actively noticed noise issues was on a family holiday to North Wales (during year 1) where (autistic son) struggled with the volume at a kid’s cabaret; He covered his ears, became upset, tantrummed and tried to run away. In retrospect, we can see many other situations prior to this where we thought he was being “naughty” which may have been similar to this situation.

(autistic son) has enjoyed soft play from an early age, getting around nicely. He was often boisterous but friendly. As he grew older (around year 1) he did begin to struggle to communicate socially with others. He had a speech and language problem which made it harder for him to speak to others and he did not mature emotionally to be able to communicate with his peers. This led to soft play environments, which we frequented, becoming places we had to abandon.

(autistic son) would sit himself in one position, usually the top of a slide and shout the rules at other children, sometimes physically pushing children who were being noisy. These environments were not good for (autistic son) and we stopped going to them. We later discovered the Tim Lamb Centre which incorporates a soft play among other facilities which is designed specially for children with additional needs.

In school, through Year 1 and 2 , (autistic son)’s behaviour in the playground got progressively worse. Becoming more violent and unpredictable. Near the end of the second year we borrowed a book from the SENCO called “The Panicosaurus” which discussed methods of dealing in stressful environments. We went on to also read a book called “The red beast” which had some similar ideas. From this, we asked school to look for safe space (autistic son) could retreat to when overwhelmed in the classroom, yard and dinner hall which they arranged.

We purchased several pairs of ear defenders around xmas of year 2, sending one to school for him to wear if needed. We found these helped.

Noisy crowds remain to be one of (autistic son)’s biggest challenges. Currently, we avoid these where possible. (autistic son) uses ear defenders to reduce his sensitivity to noise and becomes anxious about going into situations that are noisy. Exposure to noise often causes (autistic son) to melt down, close off or run away. (autistic son) gets upset by loud household equipment e.g. the hoover, washing machine and dishwasher. We generally try to use these when he is asleep or out of the house.

We noticed (autistic son) liked lights as a baby because he used to love staring up at lights in supermarkets and other shops. As he grew older he would often stare at lights silently for long periods. Once we started to understand (autistic son)’s difficulties we were able to use colour-changing lights to help him to calm down and to help him to get to sleep at night. Just recently (autistic son) had developed an obsession with being in the dark when he feels anxious, he will run manically around the house shutting all the curtains and turning all the lights off, saying he needs to feel ‘safe’.

We had great difficulties weaning (autistic son) on to solid food and ended up getting up very early to give him breakfast and also skipping basic purees and moving on to more finger foods and proper meals pureed. He always rejected bland foods and had surprisingly adult tastes, preferring stronger flavours, herbs and spices. (autistic son) now eats a great variety of food but still rejects bland foods and mild tastes.

(autistic son) is very sensitive to touch on his feet. This is a particular problem with grooming as it is a complete nightmare to cut his toenails (he also doesn’t like the sound of them being cut). We have in the the past had to hold him down to cut his nails with him screaming that we are hurting him and he hates us and fighting us. Recently we have had some success with cutting them underwater without holding his feet. His sensitive feet are of benefit in that he tells us when he needs new shoes though.

(autistic son) has always struggled to sit still, rocking and squirming alot. He benefitted from a wobble cushion at school in year one and managed better in carpet time at school once the educational psychologist recommended he sit at a table near the carpet. He is better at sitting now that he understands he long he will be sitting for and also because his other sensory issues are better managed.

(autistic son) dislikes some textures and likes others but his likes and dislikes are more extreme than you would expect from another child. He loves soft fleecy fabric and will stroke or grab people’s clothes if they are of this texture. He has often pushed himself under soft jumpers that people he knows are wearing and grabbed hats and scarves off people. He dislikes lycra material and cold floors. He will stand still if he can’t see a way of getting out of the bathroom without standing on the cold floor.

At one point during year 1 or 2 (we are unsure of exact timing) school tried (autistic son) with a weighted waistcoat which they made from a school jumper and sand.  This was to help with his sensory issues and tendancy to bear hug his piers. This had limited success. During parenting classes at CYPs much later mum found out that these types of interventions should not be attempted without specialist support and can be dangerous.

(autistic son) also has difficulty interpreting sensory information from inside himself. We have already discussed this in relation to his toileting. He also can’t identify when he is hungry or thristy. He often struggles to recognise that he is tired, hot or cold. We have to identify and manage these needs for him and often meet resistance from (autistic son) in doing so. If these needs go unmet it often leads to meltdown. If we are busy doing something else (e.g. looking after our younger child) and miss that he is hot/cold/hungry/thirsty/tired then (autistic son) will have a meltdown and often at this point will be very resistant to us helping him meet those needs.

SLEEP ISSUES

(autistic son) had great difficulty getting to sleep from a young age. Part of this was his inability to recognise that he is tired. He stopped napping way before any of his friends. He also seemed uncomfortable in beds. He climbed out of his cot when he was one and he often curled up on the floor to sleep instead, even after we moved him to a bed. The biggest breakthrough we had on this was after we’d been to an autism support group at Thomas Bewick School and one of the parents was talking about her autistic child sleeping better in sleeping bags. We invested in sleeping bags and he goes to sleep mush better in these, gentle music and colour changing lights also help.

(autistic son) had night terrors as a toddler and this progressed to sleepwalking when he was four. He will sleepwalk for several hours most nights and needs to be followed as he is a danger to himself and others. He often bangs his head deliberately into things when sleepwalking and slams himself in doors. He has attacked his younger brother when sleepwalking and opened doors and turned on electrical appliances e.g. cookers and kettles. (autistic son)’s sleepwalking seems to be linked to his anxiety; he sleepwalks less when he isn’t in school and is almost guaranteed to sleep walk if he’s had a major meltdown or several small meltdowns in a day.

OUR THOUGHTS AND FEELINGS THROUGHOUT THE PROCESS

Mam’s views – highs and lows

High – the first time a professional told me (autistic son) was just a little bit behind and would probably catch up it was reassuring

Low – the fiftieth (or so it seemed) time a professional told me (autistic son) was just a bit behind and would probably catch up the words rang hollow and I no longer believed them

High – when (autistic son) finally started to speak words I was proud and relieved

Low – when I realised that the only people who could understand what (autistic son) said was me and his dad I was disappointed and sad for him

High – when (autistic son) overcame his speech difficulties with fantastic help from speech and language and lots of effort from us I was incredibly proud of him and hopeful for his future

Low – I am sad that I missed the first time my son called me ‘mammy’ rather than ‘googie’ or ‘gee’

High – everytime my son calls me mammy it makes me smile inside because I know how hard-earned those sounds were

Low – the day I came to the conclusion we were doing something very wrong because school weren’t having any problems and we were living a nightmare. I felt inadequate and unworthy of my son. I felt so ashamed that I didn’t even share what was going on with my closest friends and family and we both stopped meeting up with other friends with children for a while. Following this was the day I questioned if we were the right people to look after our sons and whether they would be better off in the care of someone else. I came back from the meeting with school in November 2013 feeling broken.

High – the first time someone told us we were doing a good job it was hard to hold back the tears.

Low – being judged by other parents for having a five year old who wasn’t toilet trained despite having spent two years cleaning poo and wee from every single part of our house. Seeing the hopeful look on my son’s face fall when he turned around to look in the potty and saw that it was empty. The constant drag of packing three changes of clothes for a trip out.

High – the first time (autistic son) was able to wee on demand in a potty was an amazing moment. We had a hug and I was so proud of him.

Low – when I first realised that I lot of (autistic son)’s behavioural issues were due to him being scared I felt guilty for treating him like he was naughty and guilty for not having recognised his feelings earlier and I was devastated that he had been living with fear for all that time.

High – ringing the CYPs oncall number and getting helpful advice to deal with (autistic son)’s behaviour which actually worked. Lady on the phone I don’t remember your name but I will always remember your advice on taking a bag of distractions out with us and using visual clues. You didn’t know it at the time but you were a lifeline at a very dark time in our lives.

High – When (younger son) was born, (autistic son)’s loving behaviour towards him melted my heart. Every time they are loving toward each other and play together nicely I am so proud to be their mam

Low – the first time I realised my older son could be a danger to my younger son (when he put his hand over his nose and mouth to stop him making noise and I had to forcibly remove his hand) I felt angry, frustrated and helpless. I felt useless because I could only protect him after the fact.

Low – the day I trusted my younger son to a lovely lady I only knew in passing from the school yard and kids parties because I couldn’t manage to get both of my sons into school because (autistic son) was melting down so badly. The day-in, day-out drag of dragging my screaming fighting son in to school and then feeling guilty and worn out.

High –  the first day (autistic son) started at his new school (ARC) and he went in with a smile on his face and sat down at his desk with no fuss, I was confused and looking around for my child then I was happy that he was finally in the right place then I was sad that he hadn’t got to the right place earlier

Low – the day we went to naming day celebration for one of our friends’ babies and we stuck with (autistic son) through the whole thing while other younger children were allowed to play freely without supervision. The point at that same party where i left my younger son alone to follow my older son because I was less worried about him being unsupervised.

High – the first time I realised that we weren’t alone when we met other parents with children with autism and we realised someone understood.

Low – the meeting I went to at (autistic son)’s school where it was first discussed that that school would not be suitable for him in future I felt ambushed because it wasn’t the meeting I was expected, I felt confused because we didn’t have a diagnosis and felt devastated because my preconceived view of (autistic son)’s future went up in smoke. My memory of how that meeting went is much harsher and blunter than is reflected in the minutes of this meeting and I wish I had had a representative with me.

High – visiting alternative provisions in the area and realising how much support and understanding (autistic son) could be getting. The people who work in these places are fantastic and dedicated and I cannot praise them enough. I suddenly had hope for a brighter future for (autistic son).

Low – Doors closing for (autistic son), being asked not to come back to clubs and softplays.

High – opening new doors for (autistic son) as old ones closed. The understanding shown by NAS, The Tim Lamb Centre (pathways for all), the Alan Shearer Centre, Sports connect, Arts and Dance connect, Music connect, the early intervention team (social services) and Art garden. The evening I took the boys to the Tim Lamb Centre and (autistic son) had a massive meltdown about leaving, the lack of staring, the lady who picked up my glasses and gave them back to me, the gentleman who held the door while I carried a kicking and screaming (autistic son) through and the lady who helped (younger son) put his coat on and offered to help us to the car. I feel understood and accepted rather than judged and it was an amazing feeling.

Low – Realising that the childcare arrangements we had in place for (autistic son) were inadequate and added to his anxiety, the logistics of trying to work out our budget and work schedules and everything else to make it work.

High – A month after dad reduced his hours to one day a week after we budgeted and remortgaged and realising how much more settled both of our boys were. Knowing for once that we had definitely made the right decision.

Low – when a work colleague gave me a leaflet on domestic violence because of the regular bruises and injuries I was sporting from (autistic son)’s melt downs

High – the first time I averted a meltdown by noticing (autistic son)’s warning signs and helping him to calm himself down.

Low – when (autistic son)’s mainstream headteacher told us he’d made a safeguarding referral to social services due to (autistic son)’s violence towards (younger son) I was sad, angry and scared. I am a healthcare professional and well understand the necessity to make safeguarding reports but in that moment I wasn’t thinking logically I was thinking emotionally and it felt like a personal attack on my family. I know now that it was a positive intervention, I know now that social services have helped us loads and have treated us with understanding not judgment but that day I felt judged and I felt targeted.

Right now.

I am relieved we have a diagnosis, I feel like I understand (autistic son) better than I ever had and I feel more able to help him than ever before. I still find (autistic son)’s behaviors confusing and frustrating at times but I feel that I have the tools to help him better. I am pleased that (autistic son) is finally getting the support he needs both at home and at school. I am proud of how far (autistic son) has come but also overwhelmed by how many obstacles he has to face. I fear for his future, in particular his independence and future relationships. I hope that we can teach him the skills he needs to have a happy and fulfilling life as an adult. I am exhausted but happy.

Dad’s views

There are a lot of things along the way that I have thought (both rationally and not so much) and thought it important to share. These are written in no particular order.

One frustration is that people often state “we are doing our best” or “this is the best for your son”. There is a lack of understanding that the best a person/professional can do is not actually always the best and it gets tiring listening to people telling me we should be happy for the sub par standard that seems to be labelled as “the best” sometimes.

I think that every referral to a SENCO should come with a suggestion to include SENDIASS (previously parent partnership) or other independent person, from the first meeting. I think we were lucky to have a good relationship with a good SENCO, but this is not the same for all and in my opinion this would help a lot of people engage sooner with schools. I think having an independent person producing minutes of meetings and being an advocate for your child is also very useful.

Regarding CYPs. I find it almost diabolical how their case loads were being managed. It seemed like a person had our son’s case literally and physically on their desk. When they ended up off work for a long period of time, no one took over or checked through that caseload. The individual professionals we were in contact with in CYPs were great, caring and helpful. Someone needs to make sure that those people are being supported to manage their caseload properly.

The actual contact time with CYPs was very little, maybe 12-15 hours (plus any time they required to conference and write up) – we went just over 9 months from referral to diagnosis. This is appalling and someone should be ashamed of this timescale.  Ashamed enough to change it.

Regarding interaction with the council. Again, individuals were kind and helpful. The system these people are working inside is shockingly poor. We heard of long waiting lists for provision yet there is no push to increase this provision. Transport to provision is welcome but we have moved from a family with 2 kids who can go to school together, engaging with each other,  to separation through the day. This allows our son to get to the provision he needs for school but blows apart out family in a way that I will never forgive anyone for. Within the transport service, the staff are patient but needed to be asked to provide simple replies to emails. I never had replies to complaints made.

I felt that everything took a lot of pushing to get started. Almost like no one wanted to see an issue so that they then wouldn’t have to work to fix it.