Diagnosis, or not

Today was the feedback from my son’s autism assessment. It’s been a two year process. The conclusion: no diagnosis of autism. We had already had a letter explaining how that decision had been reached but today we met the (very competent) clinical psychologist to discuss the findings. 

It’s a strange thing really. I didn’t care one way or the other – I just wanted to know. My gut had always told me that there was something different about my boy; about his need for routine, his obsessions, his sensory issues. I never really had anyone to mull this stuff over with. My husband seemed to just shrug it all off. Sometimes I’d mention something on the odd occasion I’d see another parent and they’d tell me that theirs was just the same…but, no, when they described their child it just didn’t sound quite the same.

Several lengthy questionnaires (and over a year) later we had our first appointment with the psychologist. We discussed the issues with our boy and had reams of examples to give. Honestly it was one of the most uplifting conversations I have ever had. As my husband and I openly described behaviours and an intensity that wears us down so completely the psychologist appeared to understand where no one else ever had. Our son is intelligent, polite, follows rules etc. No one could ever imagine how exhausting managing my boy’s ‘quirks’ could be. We felt like failures. Here were we with this fantastic son and yet, somehow, we were just collapsing with his intensity. So, you can appreciate, having someone recognise and validate what we were saying was a huge relief – maybe we’re not crap parents after all?

The next appointment was our son meeting with the psychologist and an assessor on his own. I fell asleep in the waiting room. He was brought back out to me after 40 mins. I assumed that given the speedy turnaround that they had quickly arrived at the conclusion that he was not autistic and we were, as we feared, just crap parents.

In the next meeting the psychologist fed back to us and I couldn’t believe what she said: our son scored as highly autistic on 2 out of 3 of the measures. I was shocked. They had observed so much in such a short space of time. Entirely selfishly I was so relieved, my god, it’s not just me and my mental illness, two actual trained professionals saw it too! I’ve always been so scared that all of this is just in my head that to have it confirmed, after 10 years, was just…I can’t even describe it.

However,

Ah yes, there was a but. He hadn’t scored as autistic at all on the 3rd measure. For autism diagnosis the person must score on all three measures – a triad of impairments. Also the report from his school completely contradicted what we had reported. Ok, so next steps were to send a trainee psychologist in to observe my son in school and then take the complete body of evidence to a cross functional panel to decide. Ok, cool with that.

Well, you know what they decided, no diagnosis. So we discussed it. Honestly I didn’t mind whether he was diagnosed as on the spectrum or not, I just wanted certainty. Being told he was a borderline case was my worst fear. He does show difficulties, strongly in fact, in 2/3 areas but, but, but this is not ASC. It was the rituals thing that he doesn’t do so I said that he does this yawn/lip smack thing and looked at my husband. No he hadn’t seen that. Ummm…ok…just me…

Somehow I then started getting emotional. I told them about my BPD and cPTSD diagnoses. This changed things. They knew already about my mental health problems but when I confirmed that I had those specific diagnoses, officially then questions were asked about how I was coping and was I being supported adequately by the adult mental health. I threw myself on the sword babbling away about my own concerns about projecting my own difficulties on to my son. I was awful, however I tried to reassure the psychologist that I felt my parenting was ok. I looked to my husband for confirmation. None came. Talk about leaving me hanging. The psychologist reassured me that there had been no concerns about my fitness as a mother and that the adult mental health team had not been in touch with any concerns. That helped. Would have been nice to hear something reassuring from my husband.

Anyway, suddenly the mood lightened. We all agreed with bright smiles that everything was fine and my son was discharged from the child and adolescent mental health (CAMH) team.

And that was that.

Two years. Hundreds of questions. Half an answer. 

Doesn’t matter though does it? Let’s be honest, with a BPD mother me like he’s up against it. 

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