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.
Hi NAS63549,
I'm sorry to hear about your concerns regarding your son's education. You may like to contact our Education Rights Service who provides information, support and advice on educational provision and entitlements. Please see the following link for further information: http://www.autism.org.uk/services/helplines/education-rights.aspx
I hope that helps.
Regards,
Kerri-Mod
I got diagnosed with Asperger's at age 15 after I started self-harming on my arms and legs with a slate in school. It took that to get anyone to finally refer me to a psychiatrist. My mother had been to doctors for years asking for help with my behaviour and what not and had been ignored. So don't feel you have failed your son. Often the system is very ignorant and it takes time. I wanted to emphasise that your son finding out he's Autistic at the age he is, is a little younger than I did so perhaps you can take that as at least something positive.
The wait you have to experience is really awful. One thing you could possibly do is look for an Autism support group or social group in your area and your son coiuld go, and you could tell a white lie like he is in the process of being diagnosed if anyone asks if he has Autism. Then he might be able to meet a friend or at least pick up some tips from other people.
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 :-)
I'm autistic and a teacher.
NAS63549 said: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?
The short answer to this is no. Teachers in mainstream schools are there to teach and that’s what they signed up for. I have a friend who teaches yr2, she has to mark 90 books every night even though a lot of her pupils don't care about these comments. On top of this she prepares her lessons, keep on top of curriculum developments, attend school meetings, has a lot of pressure on her for her class to achieve their targets etc. For this, she's only earns a very low wage in comparison to other roles with similar workloads and responsibilities. I think it's outrageous that teachers are expected to be everything to everyone, such as dealing with MH issues, spotting disabilities in the limited time they have with the child even though their parents can't when they spend every evening, weekend and holiday with them etc. It’s no wonder so many are suffer from MH issues themselves and droves are leaving the profession. Especially when parents show such little respect for what they have to go through.
I am autistic, therefore, if your son was in my class I wouldn't necessarily have known his behaviour was out of the ordinary as he may have reminded me of me. Autism came on my radar after attending a 1/2 day course 6 years after I qualified as a teacher. I then had to do a lot of personal research to discover more about it to realise that this is my neurotype. Before this I would only have suspected someone was in my class was autistic if they demonstrated the very narrow view I had of this neurotype.
It is believed that 1% of the country is autistic. As we're a very small minority the reality of the situation is, like you, most people don’t have a clue what autism is or how it presents. If your son’s only 12 now and receives a diagnosis soon the positives are that he’s found out a lot earlier than most (I was 37). Now he knows more about who he is and why he does things he’s in a much better position to develop strategies or more healthy ways of thinking to achieve the life he’d like.
If an official diagnosis is what you’d like, if I was you I’d get a credit card, pay for a private assessment and pay this off in whatever amounts you can afford over however long it takes. If your son is diagnosed and you then apply and are awarded PIP you could pay this off in a few months using this money.
Even with a statement your son’s school is likely to have limited knowledge, therefore, as mum you will still need to take the lead in finding out more about his needs and how they can be supported. After all, you’ll still be in his life long after his school teachers, who may only know him for a year. I recommend you sign up for as many FB groups as possible, attend any classes that are on in your area and join a local support group.
You haven't failed your son - many high-functioning kids slip through in the mixed-ability classes in most schools.
You can pay for a private diagnosis - it can be as much as £1000 but it can be done very quickly - maybe a few weeks.