Autism Diagnosis, Here Comes Round 2...
Updated: Sep 30, 2018
Perhaps you would think that after already having a son with Autism that diagnosis the second time round would be straight forward - or that surely after all we've been through it wouldn't happened again... Maybe after having experience of fighting for a specialist school place, that 2nd time round would be a doddle... It was not..
There had been a question mark over our second child - was he merely copying his autistic brothers behaviours? was this the affect of living with an older brother with autism? Or was this him?
Just before we were about to leave the mainstream school in 2012 (both himself and his brother attended) we were told that the school felt it was time to refer our son to the community paediatrician because they felt this was more than just copying behaviour. However, due to relocating this did not happen. We were honest and upfront at his new school, hoping they would refer us but they didn't. I personally think that the school felt they knew how best to handle this and that the problems we told them about were either exaggerated or just wouldn't happen in 'their' school. Well they soon discovered that was not the case, to the point that they would only accept him part time. They also informed me that they couldn't refer children to the community paediatrician and that we would need to go through our GP. I was a bit concerned, as with our last son, the GP did not believe our eldest could have autism at all and pretty much escorted me out of his surgery before I had a chance to discuss my concerns. I was thankful for our old school being able to refer - he is now diagnosed autistic and attends a specialist ASD school. Thankfully our GP here, is very understanding, although surprised that we were told to go her, she did help. She would need evidence from school to back up the referral so I then went back to school and they wrote a report during the summer holidays for me to forward on.
Our second child then started his new junior school and the first term was a honeymoon period and went okay. He did stand out as being different and the SENCO called me to say, had she had known our sons difficulties she would have done more to settle in. I discovered the SENCO says a lot of the right things but didn't really follow through. We were lucky to get an emergency paediatrician appointment - we were handed questionnaires for the teacher to fill out and send back in. Although our son was having difficulties both socially and with behaviour at school - not to the extent as our eldest - the paediatrician marked the totals from the questionnaires she said school had not provided enough evidence and therefore would have to discharge us. She did write on our letter that she felt our son did have a learning/difficulty of some sort and would be willing to see us again in the future.
I remember coming away thinking well my son must just be really naughty and attention seeking then. These behaviours were just a result of us being so preoccupied with our eldest and his difficulties, rather than he presented and does present in a very different way to my eldest with autism. I figured that as parents we needed to be firmer and stricter on the boundaries. School life was very difficult for him, we had meetings with senior leadership who said they would put x,y,z in place and then he'd be good for a couple of weeks and they'd stop the referrals. It was frustrating. I know they have tight budgets to handle. I knew he had problems with his handwriting so I took him to see an educational psychologist to assess his handwriting. It cost just over £500. The report was great and told the school exactly what needed to happen and where his difficulties in processing and remembering lie. She also advised us that he should be seen by an occupational therapist, as he had a lot of problems supporting himself.
We found a private occupational therapist to do an assessment. This also cost just over £500. It was a brilliant report, very detailed and gave us great insight into our son. He was diagnosed as having Sensory Processing and Sensory Modulation Disorder (SPD & SMD). Attached were action points for the school to adhere too. He found concentrating in class difficult and this was because he was in an open plan environment.
One day I found out from my sister, who's work colleague had informed her (by way of her daughter who was in my sons class) He had run away and got off the school premises. I was not told about this - until his teacher casually mentioned this to me at the end of the week. I was not happy to find out information regarding my sons safety in this manner, coupled with the lack of following through on what they say they were going to do and the report that being in open plan classroom would harm his learning, we decided to move schools. The school had never suggested an EHCP or statement to help him with his needs. I was worried about the effect of moving to another school and starting from scratch on evidence collecting but I believed this move was in his best interest.
A new school
The new school had a small classroom and class size and his new teacher was very firm. They were well informed of my son and his needs. After a few weeks, parents evening had come along and they felt that he was on the autism spectrum and we should go back to our GP and ask to be seen by the paediatrician again, armed with our new reports. Unfortunately the last Paediatrician had now left and we had to go back on the waiting list. It took till the summer term (from October, he was in year 4) to be seen by the paediatrician. He read the reports and sent us away with questionnaires. I filled in ours (we were well versed in filling in questionnaires by now) and gave copies to the teachers to fill in. They were then all sent to his office. Almost a year later, (summer and he was now in year 5) we got our follow up appointment and the paediatrician had lost all the questionnaires and had some things in his file but he wasn't sure of the date of any of them. He suggested we started again and said he would post out the questionnaires to me and see us at our next appointment!
The school had also refereed our son to the occupational therapy department for treatment for his SPD and to help with his handwriting difficulties. This also took over a year to come through and then we were told that the NHS no longer provides treatment for SPD. Both myself and the occupational therapist found this ridiculous, as it hadn't just disappeared - he had real difficulties and a sensory diet/treatment program was needed which is what my eldest receives and still currently receives in his specialist school for the same condition. He could however, have help for his muscles regarding his handwriting. I was thankful that the school had put him forward, as this had really helped him and the OT was able to give us great insight into our son and his difficulties.
My son was getting older and wasn't getting any better at social/behaviour communication. We, as parents and school followed through on discipline/rewards and worked very hard but there was no change. I had, had enough - this wasn't naughty behaviour even with the most stubborn neuro-typical child there would have been some improvements. He still struggled at school and would regularly have the highest of their reprimand system - however the school also rewarded his achievements, which I felt would be good for his self esteem. At his previous school, an in-house test revealed his self esteem was at rock bottom and this worried me greatly - I didn't want him to view himself as a naughty child. They placed him in specialist art/drama therapy and were willing to work with us and him. He completed the therapy course and took it is as far as they could go but he still struggled. He wasn't just being difficult, he was trying his best but still just didn't get 'it'. This is why it was affecting his self esteem. He was working hard, his body and brain just didn't relay the signals and process information in the same way as everyone else.
The NHS cutbacks meant my son had longer between appointments, sensory processing difficulties were now no longer recognised, we decided to go private for a diagnosis. This way he could be assessed and we would know for sure rather than just a questionnaire. It did cost money but it was money worth spending. We shopped around for quotes - well over £1000 and then thankfully we found a doctor at our church who did private ADOS assessments. Thank you Lord for your provision! We were thankful we were in a position where we could pay for private reports rather than keep waiting on endless waiting lists.
The assessment was thorough and was done so much quicker. Our son was diagnosed as having autism at aged 10 at the end of year 5. When she told us I can remember my stomach flipping - its not news you want to hear but at the same time I just wanted answers as to why, why did he find things so difficult? yet at the same time he was so very different to his diagnosed older brother. It is a spectrum and each child has different difficulties and displays them in different ways. For example; my eldest won't talk to strangers, he will look and speak to me to answer them or wait for me to answer on his behalf. My second son will just start up bizarre questions with strangers or ask them inappropriate things. Both of them hate light touch, my eldest would respond violently but our second child would become hyper and crazy (both are better at handling this now they are older). They self regulated in different ways, although had the same condition. I knew all this in my head, the spectrum but it was different having it confirmed by a doctor and seeing the report in front of you.
Trying to get help from the Local Authority
Now that we had a diagnosis we thought it would help our case to get an EHCP to better help him through secondary school. This is a legal document regarding all his needs and requirements. The school had been reluctant previously due to evidence needed (time spent at the school to do plan and reviews, therapies etc) and that he achieved academically, even though he found school difficult. It all came to a big crescendo in year 6 and he clearly was no longer coping with what was expected of him now he was in his final year and SATs were on the way. The school were able to get him extra time to sit his SATs and were being advised by the primary behaviour trust to help support him. We applied ourselves for an EHC assessment, it had got to the point where he now attended on a part time basis to help him cope rather than be permanently excluded. This move did help him cope and school also applied for an EHC assessment.
During this time, I was in talks with his secondary school regarding his needs and we had weekly settling in sessions, however when it came to the settle in days for all prospective pupils - they did not prepare/follow our advice. It did not work out and he ran away. I was called in to help - it took a long time to calm him down. Despite the deputy head saying that would contact us to come up with a new plan for him with the SENCO, (who was currently away), no one called me. Later this week we also received the news that our son was not going to be assessed for an EHC because he did well in his SATs (despite refusing to do any revision and only attending part time) and there had not been enough plan and reviews from ed psychologist - which there had. This is not an acceptable reason to decline an EHC assessment and I could have appealed. The local authority were just batting them back, buying themselves more time, keeping their figures inline.
I did not want to continue fighting a system with so many cutbacks and watch my son suffer in the process. I had been here before. We could not afford to send him to a private specialist school - my eldest sons fees are £48000.00 pa which is paid for via his EHCP. I did not want to send him to a secondary school who couldn't even be bothered to call me back after a major breakdown happened in their care - I had lost all faith in that school. He had attended schools like this before. I no longer wanted to take part in this failed system, it was unfair, it was heartbreaking. The school and health care system are being squeezed so tightly that care has become second place, money being first.
We kept our NHS appointment, it was a new paediatrician, as the previous one had left. We showed her the private report and she accepted the ADOS and put on his NHS records his diagnosis. She also asked me for our doctors details, as the waiting list for ADOS was now 18 months and they were at the point of needing to close the list and she knew people were desperate to get help sooner. We were told that as our son had now turned 11, he would be discharged from the paediatrics and would move under CAMHS (child adolescent mental health service). About 6 weeks after we received our discharge letter we then received a letter from CAMHS telling us they would not see our son as autism does not fit under their criteria for mental health. It is a struggle to get and keep health services, even with a diagnosis.
I had a friend who home educated her children and was enjoying it. Whilst it hadn't worked for my eldest, our second son was used to being at home with me as he was 'flexi-schooled' (part time). I researched and found local classes and activities. On our home day, we went to the HE group and he decided he would prefer to be educated this way too. I knew what the mainstream and fight for EHC/school was ahead and decided to take a different path. I wrote a letter to de-register our son and a letter to the local authority explaining why.
I shortly received a phone call from the head of education and exclusions regarding our reasons for home educating. He was extremely concerned about our journey and experience and wanted us to appeal but at this point I was too tired to fight, and I wanted to used the energy I had, for my son. I had made the decision and we were all happy with it.
We have just done our first year of home educating and it has been fun - its been good for our relationship and I don't regret our decision. He is thriving under this environment and taking ownership for his learning and education. It does take up a lot of my time but from experience I would say it has taken a lot less then going backwards and forwards to a school that's not working, dealing with the fallout from the distressed child and then chasing the authorities for help etc.
A lot of this, overlapped with my eldest as there is just 2 years between them. We also have 2 younger children to look after and my youngest had a moderate speech disorder too. Currently as I write this, my children are 14, 12, 10 and 8. So they are pretty close together in age. His speech disorder also required appointments and therapy. Nothing was straightforward and in that short amount of time, the cutbacks were greatly felt.
During our first year of relocation, please read here for more information, we also experienced 3 deaths - the headteacher from their first school, my aunt and my uncle, an unwanted house move - as the landlord decided he wanted the property back after 6 months and my sister split from her husband. The second year, the death of our brother in laws father and my Nan, along with the disappointment of not being able to get another mortgage to buy a house and trying to secure our eldest's place in the same school for his secondary education - not a given (and move from a Statement to an EHCP). After a year of our eldest being in the right placement and our family life becoming calmer, the affects of living how I did to survive, caught up and I became very unwell with my mental health. I was put on on-going medication and therapies. The third year, we lost my Uncle and my Grandad, our second son received a diagnosis and we managed to get a mortgage and buy our home. In fact we had a house offer accepted on the Wednesday, diagnosis on the Thursday and my Grandad died on Friday. It was a crazy week after a very crazy time. It was a season of great stress.
There were many times I was angry with God, angry with the disappointment but I kept talking to Him, I kept praying and had people around me who prayed for us too. God helped me, put the right people around us and provided for us. He taught us lessons and we worked through things and grew in our faith. Its been a very busy and stressful season - I've aged and grown. I'm more assure of whose I am, therefore knowing who I am. Stress is stressful, pain is painful nothing takes away from that, those feelings but I know that Jesus experienced pain and stress, that he chose a horrendous death to bring me into salvation, He followed his Fathers plan because He trusted and knew Gods goodness. Going through these difficulties, I have learnt and empathise in ways I never knew I could. I've been stretched way beyond what I believed was my capacity and God has been so faithful, so patient with me. For more on why I believe God is Good please read here.
Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
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