Published on 12, July, 2020
My son is now 12 and has always been quirky. It has never been an issue for us but has caused him great problems in his life outside of the immediate family, both socially and academically. We are now in our first stages of reaching an asd diagnosis and i feel like i failed him. How did i fail to recognise, for so very long, the behaviours that have now triggered this referral? Im also angry at his primary school, surely the specialists involved in the lives and the care of young children are trained to identify additional needs?
Without a formal diagnosis, his school are refusing to provide any additional support to him and yet im advised that this process could take up to 18months. At which time he will be entrenched in GCSE study and higher expectation than ever before.
Does anyone know how to overcome the phrase that has become so prominent in our lives, the 'without a formal diagnosis' dilemma? I have found a number of services that offer a world of hope of fantastic support and development but also cost the world. If i had the funds to provide my son with all the support he needs, there would no question of him receiving it but unfortunately i dont.
Im scared for him now, school has become a place of severe torment that is directly affecting his emotional state - a state which he struggles to understand and is beginning to believe that because he feels so bad, he must truly be bad from the core.
And from a selfish view point, i cannot seem to overcome the feeling that had i identified his quirks as having a deeper cause, his life thus far could have been so much more.
I would greatly appreciate any sign posting suggestions and advice on how to overcome our upcoming challenges.
NAS63549 said:And from a selfish view point, i cannot seem to overcome the feeling that had i identified his quirks as having a deeper cause, his life thus far could have been so much more.
I don't know the specific issues that your son faces (& hence what might have been different) but I think you can be justifiably pleased at having identified a likely explanation before he completes adolescence. Rather than feeling guilty, I think you deserve congratulating for caring and getting him on a pathway to diagnosis. From my personal perspective, with hindsight, I started feeling that I was a bit different when I was about 9 but didn't start properly struggling until I was about 30. I was diagnosed at age 52 and kinda wish it had been 40 but not sure my life would have been much different if it had been 10.
On the "without a formal diagnosis" front, it's worth pressing the point to see if whoever is saying it has their facts straight. AS NAS50301 says, as we only represent 1% of the population many people don't know the presentation and many don't know the law. For instance, in the workplace, the Equalities Act can apply without a diagnosis as the act applies to individual needs not an overall diagnosed condition. The only thing I and my workplace have found that *does* require an ASD diagnosis is getting help through Access To Work. The situation may be similar with other agencies than workplaces, but I have no experience of this. That said, when I had a go at our Occ Health department when I was struggling, I was fed the "without a formal diagnosis" line by the head of Occ Health!
Anyway - you're doing a great job. Keep chatting in this forum :-)