Mum Lisa recounts the journey she's been on to get a diagnosis and help her autistic son - part 1.
Birth and Beyond
Another boy! After the awkward pregnancy our second son had arrived. But this baby was completely different, he did not take his milk, he did not sleep. We tried different bottles, different milk, feeding in different positions - nothing seemed to work. He'd have a few mouthfuls, then refuse the rest. Around every 45 minutes day and night he'd scream, we'd offer more milk, but again just sips. On health visitor's advice, we tried to continue, despite struggling to function out of sheer exhaustion. At 12 weeks, after a particularly awful morning, the health visitor hadn't returned my call, so off to the GP it was, who instantly said to wean - looking back I'm sure I looked the wreck I felt!
Weaning did help, but there were still patterns of crying, for no obvious reason. The nights still consisted of several part-bottle feeds.
As his baby stages passed, his speech didn't develop like I'd expected. I tried to stop comparing him to his older brother, but there was just something different and I didn't know what. The nursery setting that worked for our eldest wasn't suiting him so we moved him to a childminder, when he could be nurtured more.
At 2 he was still fairly mute, he had understanding but not words. If he wasn't happy he would bite to display this. After intensive work with this childminder, she managed to find his voice at age 3, his vocab was good and back on target.
I still found myself watching him when we were out, perplexed by the 'something' that was different. He found it difficult to socialise with children, preferring every time to engage with adults rather than the child. He found facial expressions confusing and voice tone didn't help. When he was concentrating on something he would zone out, he lined up cars and toys. Out and about, he would run off - I had limited control with my voice.
His interests became different and untypical, so did his questions. Why is there gravity? How many cars could you fit on the moon? What is CO2? The questions were random and if I couldn't answer these satisfactorily, it would be re-asked until it hit the level of detail he required. Google became my best friend.
He loved all types of food and would try anything. Completely different to his sibling and me. He would talk to anyone regardless of whether he knew them or not. His energy levels were always high, no matter what I did, he never tired. He had no sense of danger. Toilet training was hard. He had no interest in being dry and it took well over 9 months to grasp. Even now he still wets at night.
On his preschool graduation they commented that he would make a good detective!
His first year in reception initially went OK, but his concentration was poor and keeping him on track was mammoth task. He hated doing homework, each night when I picked him up he became overly energetic (like a caged animal being let out). I raised concerns with school, to be told no issues. I asked for support, they assessed him but found no issues.
His last baby sister arrived. His interest in her was minimum. She was a premature baby, my health wasn't great and at the same time my dearest Gran passed away on Christmas day 2015. It was the worst Christmas ever. We tried to remain upbeat as she would have wanted, but her loss was too much to bear. I was hit with depression, nothing seemed to break it and I had surgery, which took a while to recover from.
Again, I contacted the school about his behaviour, to be told no issues. His play was becoming rough at home and a general concern. I felt I couldn't reach him like my other son and this just chipped away at me. He became the class clown to meet his need to be liked by his class mates. Once again our GP confirmed there was no need for a referral.
The violence was increasing, and he was very hard to manage. His outbursts were random, and his mood changed in seconds. The party invitations stopped, friends disappeared and the stares when I was out with him made me very uncomfortable.
I lost count long ago the number of times other parents commented on my son, how I should take greater control of him. There were many occasions he would run off, knowing full well my mobility issues.
His play was socially unacceptable, shouting in people's faces, inappropriate words, rough, and he'd barge past without apologising. Early in the year, school put through a social services support request. We were forced to do a non-violence resistance (NVR) parenting course, which, although it helped his dad, didn't really help me.
All the meetings implied we were, in fact, the route of the problem and using our son as an excuse for not being able to manage his behaviour. Our three other children were fine, we had no concerns with them, yet at 7, he was so hard to manage.
After months of feeling terrible, I took the plunge and paid for a private diagnosis. We drove to Milton Keynes, spending 5 hours with a speech and language therapist and a consultant paediatrician. They confirmed he had high level of need, high functioning autism with Pathological Demand Avoidance. They told him at the assessment, he didn't react well to it, but as they said, he needed to understand why he was different.
The drive home was long and full of many questions, I decided on a diversion to the Disney shop on our journey home. He chose a large soft cuddly dog named 'dogo'. This became his comforter for a few weeks. It helped him remember the day, process what was said and learn to accept.
They recommended an ADHD assessment for him.
The following meeting, armed with the 20 page report from the private diagnosis, was completely different. They didn't blame us for bad parents, yet we were blamed for being overly keen to 'label' our child. We didn't want the label, we didn't want him to be 'different', all we wanted was understanding and the ability to give him an equal opportunity to everyone else in life.
We found Social Services useless, no support was offered apart from a few chats each child had with either the school nurse or the health visitor and a few sibling sessions with both boys to reinforce the sibling bond, but this didn't work as it didn't address the issue. We asked to access support of any kind and were told nothing was available, not even further parenting courses.
We paid for private Autistic and PDA course through the Sunshine Support Group, this was a real game changer for us. As I listened to the speaker, things began to click into place, it started to make sense. How simple things like maintaining the same tone, avoiding eye contact, bear hugging at the onset of a meltdown could actually help him. I cried on the way home, I felt a failure. I had needed this information years ago. Why did he (and us) have to have suffered so much before I did that course? The reason clearly is because we believed what we were told, it was our parenting and nothing else.
I spent considerable time researching to find some support for us, anything and everything. I discovered some good Facebook groups, full of people who just get it. These have offered lots of tips and it's helpful knowing others are out there who are either starting their journey or part through like us.
There are a few charities which also offer something to help, and I finally managed to secure 6 hours respite per month for him. This is still fairly new to us but is an absolute godsend. In those three hours every other week, my daughters and eldest son can have chill time they so need. It also gives me an opportunity to recharge so when he returns I feel better able to manage him.
We don't have any friends or family support, so I decided to put him into a child minder on a Monday after school, just to boost our respite time. Almost instantly there were issues with his behaviour, just like at home, yet school still claim they don't see it. The childminder is fabulous, knowing her for many years certainly helps, she truly wants the best for him but also struggles like me to reach him at points.
The Road Ahead
We finally have his ADHD test in a couple of weeks and next month his first paediatrician appointment on the NHS. Just maybe then he will have some help. Am I pleased to have a labelled son? No. But I am pleased to have the diagnosis, as now I can gain the understanding to help him.
Places to turn for help - Lisa's personal recommendations