Hi everyone, new person to the discussion forum.
I want to share with you all a detailed positive story about my son’s recent ASD diagnosis and the assessment process. I’m not wanting this to come across as arrogant and I’m simply wanting people to realise there are positives to the assessment process as we all know, from this forum, that there are hundreds (possibly thousands) of families finding the whole thing incredibly frustrating and stressful. I’m also looking to share some advice that assisted me and my wife when we went through this process that I genuinely feel put us in good stead to getting through all this with minimal fuss/stress and getting the outcome we felt our son deserved. I’m hoping this post gives people some comfort when going through the hurdles you have to jump through when getting your child assessed and maybe give families contemplating having their child assessed a general idea of what to expect.
So, to give you a bit of background, my wife and I have a 4 year old son who was diagnosed earlier in the week with high functioning autism. We live in Fife up in Scotland and went through ASCA (Autism Spectrum Community Assessment – not sure if this is a UK wide thing or subject to different areas in the UK) which involved the input of various health professionals and his state nursery. The outcome meeting (which was held at his nursery and involved everyone coming together to make a decision) was a unanimous yes in terms of him having ASD. Whether it was pot luck that the people we had involved with him were fantastic we had little to no knockbacks when attending the numerous appointments/assessment he had to endure. The whole process took little over 2 years and we had our suspicions from a very early age that something was perhaps not quite right. As a new-born our son was incredibly content and he would never cry. Hand on heart we never had one sleepless night and he would only ever get up for a feed/nappy change once during the night. We realised that by the time he got to 16 months his walking was very awkward, he was quite late in moving about and we put it down to laziness. We noticed a significant amount of hand flapping as well as a reluctance to play with his toys conventionally instead choosing to either line them up or study their components. I wouldn’t say we were overly concerned at this point about possible ASD as he had fantastic eye contact, his speech was great for his age and we mainly wanted to get his walking looked at. We went to his GP who referred us to someone at the hospital who in turn took on board our comments about his hand flapping and he made the decision to refer us to a Paediatrician. At this point he wasn’t far off about 1 and a half years old.
For whatever reason my wife, who made the decision to be a stay at home Mum when he was born (a combination of factors), engrossed herself in studying ASD and it became apparent that there was scope to having this looked into. He was never one for socialising with other children, he preferred adult interaction and it came across that he felt intimidated by other kids. We put this down to his walking issue due to his balance being very poor and the fact other children can be boisterous and in your face at times. It was almost as if he knew adults were more balanced in their gross motor skills that he felt safer around them. In hindsight it could be the lack of social understanding that made him a bit unsure on how to interact with other children. We met with a Paediatrician who took on board our comments and was very understanding and supportive of our concerns. She was keen to do a Griffiths Assessment to get an idea of where he was at in his development. The outcome of this was he was way ahead in some areas but lacking in others. She agreed his gross motor skills were behind and felt he had ligament laxity. To give you an idea he couldn’t walk upstairs unaided, would struggle to get on and off a bike, wouldn’t trust himself to jump off the smallest of steps, would run like a new-born, would constantly have his arms out as if he was trying to keep his balance etc. As a couple we made the decision to put him into a private nursery every Friday afternoon to try and get his social skills improved whilst also getting him prepared for when the time came to go into mainstream state nursery. I really feel this was a great idea as he did start to come on and would always look forward to a Friday afternoon. We never really had any issues with him having ‘meltdowns’ and/or us having to go and pick him up due to staff being unable to soothe or calm him down. At this point we found he had his own little routines that he would put in place, this was mainly in the morning/breakfast and at night/bed time. Any slight change to this would result in him becoming anxious and clearly not himself. Furthermore there were scenarios where if we were going out we’d have to prepare him for what we were doing. If we deviated from this structured routine i.e. if I got in the car and realised I needed petrol he would have a meltdown as it wasn’t part of what structured plan we had prepared him for. The hand flapping, facial grimaces, echolalia, anxiousness, poor gross motor skills, lack of social understanding, occasional meltdowns were all becoming common in his life which we would feedback to his Paediatrician. We began to be more aware about ASD and the various coping mechanisms we had to put in place to assist our son, and ourselves to a degree, and over time it became second nature for us parenting him this way. What might feel like an awful lot of hard work to another parent was generally straight forward to us because we had been doing it for so long. We always knew instinctively that we knew our son inside out and I think that made things so much easier. We could spot the signs where we’d have to adapt our parenting to assist him and I believe it was through the many hours of research we put in.
Things started moving at a frantic pace and soon we had appointments with other health professionals. He then went into mainstream state nursery (Monday to Friday – 8:30 til 12:30). I’ll admit we were a bit anxious ourselves on how he would cope as the nursery is all open plan and there can be up to 63 children in the nursery at any one time with about 7 or 8 nursery staff. We had to educate the school sharpish on our son’s needs and the assessments he was going through. To give the school their due they have been fantastic thus far and have a reputation in our town of being one of the best for bringing kids with additional needs on and understanding it all. Sadly we had been given some feedback of instances of him lashing out at other kids, sometimes with no warning, but the school were aware it could have just been situations where he’d been overwhelmed and didn’t know how else to react. One thing we noticed was if someone was running up to him his instinct was to throw his arms up or throw what was in his hands at the time. The school very kindly put him on an ISP (Individual Support Plan) and hold quarterly meetings with us to let us know of his progress (nice chance for a cuppa and a wee chat – certainly the feedback from the school was great and we felt relatively relaxed that they knew what they were doing). To put it into context his nursery go to the woods once a month and to allow our son the time to grasp what was going on his nursery teacher organised to take my son and my wife to the woods (just the 3 of them) to prepare him for all this. Thankfully they also started to notice him putting his own routines into his nursery days and it was a big relief for us to know there were others seeing what we were seeing. I’m sure many people on this forum can relate to that feeling on whether everyone involved see’s what you see and the paranoia that follows on whether you think these people think you’re just overreacting.
At this point we had already been told by the Paediatrician that ASCA was the way forward and were awaiting a concrete diagnosis meeting date. Over the next few months we continued our research and methods of parenting to help him whilst engaging with the school on what strategies were best to allow him to thrive and develop. We had meetings/assessments with Occupational Therapy, Speech & Language, Education Psychology, Clinical Psychology, Child & Adolescent Mental Health Services, a new Paediatrician after our original one retired and school staff. I think the part that got a bit frustrating was having to educate them all individually on our son as it felt like we could sit and speak about him for ages and we could never tell if they were ‘getting it’ or fully grasping how were trying to put across our views. In reality it was through the knowledge of our son that I think helped these professionals paint a picture of him prior to doing any assessment. We were also praised at the level of knowledge we had amassed on ASD and our willingness to approach each appointment without being forceful or bordering on telling them how to do their job. Another worry we had, and I’m sure everyone else is the same, is people ‘playing their cards close to their chest’. We couldn’t really tell during it all what everyone’s opinions were and I can understand why, they won’t want to give away any false hope or allow families to willingly know, at that point, what their opinion is on whether they think the child has ASD or not. That was certainly the case during our son’s assessment.
On the day of his diagnosis meeting I can’t even begin to explain the worry and nerves we had. We knew the process i.e. if one professional wasn’t 100% sure then it would be referred to FAST (I can’t quite remember what it stands for but know it’s a further 12 to 18 month wait for children to be assessed by other professionals and given an on the day diagnosis) and we really couldn’t contemplate more waiting and more second guessing what everyone thought. We had been told it was quite rare to get a first time diagnosis through ASCA so we were very surprised when we were told it was a unanimous yes to high functioning autism. The general feeling was that of relief and possibly surprising to some, happiness. We realised we were right from day 1, we had went through the process as per how it was set out, had clearly given the powers that be the relevant information required on our son, they had seen what we had seen and he displayed a consistent approach to all individual professionals. We felt like a huge weight was lifted off our shoulders knowing the supports would be available if need be and that we no longer had to ‘over analyse’ him for the purposes of various upcoming assessments. We felt we can now enjoy him for who he is and take everything as it comes. If things get tough, we’re confident there are supports out there to help. If he starts to struggle in school we have full faith the school will do everything in their power to help. It all felt very straight forward and I can’t speak highly enough of all the people that were involved in making the process as stress free and as straight forward as possible.
If I could offer any advice that I really feel will help families when going through this process it would be the following (bear in mind this is probably aimed at people either just starting the assessment process or contemplating it):
- · Know your child inside out. I know that’s a fairly obvious one but really sit down, study them, watch and listen to them. Look and gather information on little traits they do. Take notes. We’ve got notepads filled with stuff we’ve just randomly written down and noticed through the years. Trust me this will help enormously when meeting with professionals to educate them on your child. I don’t think we went into any meeting without coming prepared with all our notes. With the amount of things children can do you’ll be surprised how many of them are possibly relevant to possible ASD. Take videos. Again we’ve got lots of videos of our son from birth right up til present day with many of these being for the purposes of showing to the professionals his traits. Our son has a tendency to hold back his traits until he gets home (he must just feel comfortable at home) and it’s just a huge release of energy from him, hand flapping, verbal ticks etc. Our Paediatrician was gobsmacked at the difference between him in clinic and him at home but more importantly the videos were accounted for in our assessment.
- · Gather whatever knowledge you can on ASD. Educate yourself where possible and accept whatever supports or help that’s available. My wife attended a few courses during any free time she had and we’d regularly browse the web for the enormous amount of information available. You’ll find a great element of respect will be shown when you’re speaking to professionals and come across like you know what you’re talking about. Not to say they’ll try and fob you off it you don’t know the in’s and out’s of ASD but knowing your stuff will prepare you fully.
- · Keep your cool. During the early stages you might find you feel you’re not being listened to or made to maybe feel like you’re being paranoid. Stick to your guns. Be firm but don’t go about telling people how to do their job. Be assertive, calm and confident.
- · Have some you time. Believe me this is paramount. Try and switch off about it all when you can. If you can get some time to yourself with your partner or friends do it. If it’s a Saturday night and your wee one is sound asleep in bed….CHILL. Relax. I know I’ve mentioned the endless hours we spent studying ASD but there was a time and place. The weekend was our time to relax and let our brains just shut down for a bit. You’ll feel better, honest.
- · Take on board people’s own experiences. My wife was lucky in the sense her best friends son went through the same process as our son so in some regard we were more prepared for what the process would entail. She would spend numerous mornings when the kids were at school grilling her friend on what the upcoming, Clinical Psychology for example, appointment would involve. Again this is incredibly handy if you can find people to speak to about the process. As fate would have it my wife’s other friend is about to go through the ASD assessment process with one of her children and my wife’s now passing down her own knowledge on this to her friend.
- · Remember, what will be will be. Love your child regardless. It’s them you’re doing this for. Some of you will have to fight, some of you might have it a bit more straight forward. It will vary from family to family. If you have to fight see bullet point number 3.
- · Remember, you’re not alone.
