Would an earlier diagnosis mattered?




My son was only diagnosed at the age of 12 (almost 13), yet I had taken him again and again over his lifetime. We were under a paediatrician when he was 3, 4, 5, 6 & 7 and she didn’t want to sign him off but only ever said he has traits. I ask now, why did they not just do the ADOS! Because when, at the age of 12, they did do it, it showed clearly that he was somewhere on the spectrum. Not borderline, or mild, which incidentally I don’t think is ever the case.

So there is the obvious frustrations with professionals that I have had all these years and the accusing “have you done a parenting course”, err well yes, twice along with the mountain of books and my own personal degree in counselling of which I now specialised in working with children for the last however many years!!!! “Oh but he is an only child”, yes and again an implication. “single mother you say”, yes and again another implication. There was enough of these implications to make me doubt myself and they scarred so deep that some days I still do.

There was the psychiatrist who told me that he would be best if I got him back into school as soon as possible, writing in her report that we had discussed this at length. NO, she had discussed it and not listened to why I had taken him out in the first place. I am so glad I didn’t get bullied into that, it would have damaged him so much and we would be in such a bad place right now. Apparently the idea was about socialising him? He is not a recluse, he has a few friends and is very capable of communicating in a polite way, socialising to him is like torture. What is the fixation that we all have to be social creatures with lots of friends and work in teams? There are many a pioneer that worked alone and would never had made the advancements in modern medicine, science and technology if they had been made to work in a team! He can do it and in fact is part of a team in dance, but he has managed to do that on his own terms and make it work. Anyway my point is, why is there this big belief that our overcrowded, underfunded and dictatorial, draconian school system is for everyone?

I am so off point now, apologies, but relatively speaking it is all a result of a late diagnosis. The struggle in school to be taken seriously that there was even an issue. My son is the most skilled masker, so I guess what I was saying was not fitting with the image he portrayed. Well it wasn’t to a degree. It was very clear that verbally my son was exceptionally bright, but on paper he was behind in numeracy and literacy. I privately got a diagnosis of dyslexia because the school didn’t think it was that. The ed psych missed the autism though even though now, on reflection, there was some processing markers that should have pointed to it. So all along, the people that could have spotted it or at least run further diagnosis assessments but chose not to. I think the most important factor here for this is that he wasn’t causing a problem at school. He was conforming enough, not showing enough anxiety and behaving himself. The story was very different at home, his anxiety was massive. It did start to show its head at school on a couple of occasions but the first time, in the 2nd year of primary he was beginning to show some school refusal, so I found another school, smaller country school. This school was my life saver! The school had very low class numbers and with two years combined there was 15 students. This meant that they had the same teacher for two years and that learning was split into small groups. It was here his teacher identified his sensory needs, off the record, and adjusted her way with him. They also identified his problems with maths and got him assessed and diagnosed with dyscalculia. He was doing ok, no refusal, still anxiety but less so. He then had to move to middle school! Within the first two weeks things declined. I left him there only 3 months by which time he was waking at 4:30am having panic attacks that would last until he got into school. They had to drag him in a few times and his confidence plummeted through the floor. It was heart-breaking. Unfortunately this coincided with a family situation that had been stressful and the blame was firmly placed on that. I’m not in denial that this didn’t have a bearing on his ability to cope but I know that as soon as I started home Ed he was so much less anxious.

So my decision to home ed because I could see he wasn’t coping, yet school couldn’t, meant that I had to take full financial responsibility for his education. Which is ok if you can earn the money to pay for it. In the first year out I managed to find a fabulous childminder who was brilliant, so I could work 1 or 2 days a week. This wasn’t without anxiety on my son’s part, but because he was with smaller children and going for walks and to the park, it worked ok. Then my childminder gave up to take up a career change. He was then too old to find anyone else who I felt he would be ok with and the gap between him and the younger children was too big. This coinciding with puberty also meant we hit a rough patch. I have had to give up working away from home and concentrate it all from home. I am lucky enough to be in the position to do this. Although this doesn’t always work either. If things become volatile I am then unable to work as much, even from home. The financial impact is enormous!

Now my point here is that if I had left him in school to fail, to become a school refuser, a kid with “behavioural problems” and left him to believe that he was failing, then by now he would have one to one support, extra support with learning and possibly a taxi to and from school or maybe even a referral to a behavioural unit. Imagine the cost of this on the LA? So I ask for support and am told that I am not entitled to it because I choose to home educate. I choose? What was my choice? To leave my son in a situation in which he feels constantly anxious to a severe degree, failing his ability to learn, make friends, with his self-confidence being crushed daily to a point where he feels worthless? That was my choice.

Now had we had a diagnosis earlier then maybe the support that he desperately needed could have been in place. Instead we are left with a young man who is terrified of schools and believes he is stupid in certain subjects, and this is our damaged limitations. He also has to get his head around a diagnosis that he struggles with. As a teen you don’t want to feel different and you want to fit in. Had he had a diagnosis earlier then he would have already come to terms with this.

I think the most saddening thing is the reactions of friends. I know we are just the same as we have always been but somehow they think that we have done alright? We have coped and he has coped. Well no he hasn’t and neither have I. I now no longer have to put him into situations that he really struggles with because it is expected or that it will do him good. Friends cannot see that, they think nothing has changed. In some ways they are right we are the same people, but in other ways everything has changed. There should now be an understanding of why I make the decisions I do. There is to some degree but I am not sure they get how unavailable I am most of the time, because I have worked new things into our lives like down time. Time when I am not on the phone talking, time when I am not having a cuppa with a friend who has popped in unannounced. My time has become really precious and I actually find that if I do get some time alone for me, I am happy and am more able to function at the level that is needed. I don’t need it filling with friends, well not friends who are needing from me, I’m too empty and exhausted. Not one of my friends has offered to find out about the diagnosis or a way in which they could help us practically. I do spout on a lot about it, but they really don’t want to know. I am not sure they understood the pain of the diagnosis. I guess, because it was something I was actively seeking in the end, they all presumed I was elated about it. I was relieved but at the same time I felt bereft. The hope that this was just another phase and that one day my son will step into the big world along with his piers, had just been taken and replaced by a whole new barrage of fears. Will he ever be independent? Will he get a job? Will he have a family? Will he treat his wife (if he has one) in a similar way to me? What will his mental health be? So many new questions and fears that were out of sight before the diagnosis. I am not sure that the people around me understand that and they often say, he will be fine!

I feel like my friends are now so far removed from being part of this. I think I possibly need a set of friends that have been through this. I still love and respect my life-long friends and want to have some sort of relationship with them but I guess it needs to be separate from this situation. They, because they cannot fully understand, and I probably led them to believe, think we have been managing. Well I am managing now, some of the time, but before I was struggling. A bare knuckle struggle that until I have looked back on it, never appreciated how tough it was and can be. If only we had an earlier diagnosis that struggle would have been more about management, a much more efficient way of being. We would have got input from an OT and realised long ago the battles and everyday agony of mind, being and physicality that my son was going through. I think, if only someone had believed me or wanted to help us, we could be in a much better position now. I’m cross that I had to dip into savings to be heard, listened to at a private assessment, to then soon after get the diagnosis from CAMHS, who hadn’t really listened (the support worker had, but not the DR’s)and had just done a few assessments that they thought would show nothing, but showed the answer as clear as day! My frustration is still there and needs working through.

But then maybe we wouldn’t have grown as much as we have and found our own little quirks that get us through. The journey to diagnosis has taught me many things. Things that inform my work and also allow me to educate my colleagues. I don’t blame my friends either. They kind of want to help but just don’t know how and I am rubbish at asking. I guess I expect others to have the same tenacious want, to educate themselves thoroughly and flood themselves with information, because that is what I do, even when they come to me with a problem/diagnosis/dilemma. That is most likely the ASD in me!

We cannot change where we are at right now. There is much to accept and get our heads around, with the determination to look forward and not back, reflecting only on things that we can learn from or help others with.


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