Diagnosis Journey

Change of Venue

I’m considering changing the scope of this blog as the scope of home educating my children has changed considerably over the past few months.  With my son, what we’re now tackling is what I believe to be Autistic Spectrum Disorder Traits.  Even though we’re allegedly in a good area for getting support for ASD, starting on the diagnosis journey and already meeting barriers and challenges related not only to the condition but also for getting support with relevance to home education is proving discouraging.  I know I’m not the only parent experiencing this.  And we will overcome this.

While I am tempted to name and shame and all that as I’m disappointed in health professionals’ willingness to offer support, that’s counter productive I think to most parents in my situation.  I’ll go as far as to speak to my shattered expectations though.

I expected that because my son obviously shows behavior issues and speech delay that professionals would be duty bound to enroll him immediately in some sort of regular support program.  ‘Do no harm’, right?  And leaving a problem certainly doesn’t solve it.  I think this point is the one I’m most bitter about.  While a full investigation of the entire scope of my son’s issues is underway, there is no reason to hold back therapies for items that he already immediately and very strongly presents for.  Especially with consideration that a full investigation and diagnosis takes years; early intervention is highly advocated yet no intervention seems to take place during this investigative phase; that’s precious time lost that can never be gained back which further deepens the gap between an affected child and his peers.  It is mind boggling that this situation is allowed to exist in a Western nation in 2016.

As far as where we are up to now, my son’s had his first ASD assessment last Monday with the Community Pediatrician Team.  The result was the one we expected: he does meet the threshold to warrant further investigation by the Autism Specialist Team.  We will have to wait until that Autism Specialist Team sends us a letter to make an appointment.  Unwittingly at the time, thinking about my son’s comfort in the moment rather than what was likely best long term, we declined a blood test for genetic markers.  However, I’m going to revisit that at our follow up appointment in June that the Community Paed recommended to make sure ‘nothing fell through the cracks’ with the referral to the Autism Specialist Team– and this was said matter of factly by the Community Paed, as though things falling through the cracks were routine, which is worrisome to me.

Getting to that appointment required a GP referral.  We received a letter to make an appointment.  I went to their website to make that appointment and somehow got signed up for an appointment with a neonatal cardiologist rather than the team we were supposed to be signed up with.  While signing up, there was no way for me to tell that we were signing up with the wrong group– it was just, login with these details and pick a date, all else is unseen and automated.  So we received an appointment confirmation letter from the wrong group.  Then same day, an appointment cancellation for that incorrect group.  And then we also received an appointment confirmation for the right group, but of course we didn’t get to pick the date.  It was still all within the 18 week legal requirement for referrals.  But this detour was entirely unexpected and caused me concern for how organized our local trust actually is with their automated processes.

The GP referral for SALT (Speech and Language Therapy) went off without a hitch and my son had that appointment yesterday.  The therapist screened him and then asked what we were doing at home to help him.  She had only one suggestion to make to help him but other than that said we were doing everything we could to help him and that she wouldn’t be able to do anything further.  She said she was happy to support me in the role of helping him progress.  I think she noticed the befuddled look on my face and asked me what I more I thought she could do.  I honestly responded, “I don’t know, what can you do?” looking for guidance from her, the professional… the person with the wealth of experience in these matters who’s knowledge I can draw from.

I guess the upshot is that in her opinion, we were fulfilling his SALT needs with our provision.  It was disappointing though because I thought he would get enrolled in professional therapy as the therapist acknowledged his significant delay.  She explained that she believed the delay to be more global… in that there was no gap between his pronunciation and the vocabulary he used and citing that he is still in nappies… overall it was something she didn’t believe her services could help him with.  She was, however, happy to file a report to the Community Paed as part of their investigation.  I left with mixed feelings.

So I guess we’re completely DIY’ing it for now.  There’s other challenges ahead as well.

We’re starting to apply for benefits to make room in our budget for affording extra equipment and therapies my son needs.  While we are getting child benefit, my husband didn’t know about how child tax credit worked… especially for self employed (for a long time, he even thought we were already getting it)… and I had no idea about how they worked either.  So, we’re in the process of getting it.  We’re also applying for DLA and mobility.  I’m a bit confused by the UK.GOV website where it says that if we have DLA, we qualify for extra child tax credits… kind of a chicken before the egg thing… which do we apply for first then?  This might require some help from Citizen’s Advice Bureau.

I keep having to remind myself of what the end game is in order to stay motivated.  For us, the end game is ultimately my son living a happy fulfilling life where he realizes his potential in spite of his challenges.  I do want to pursue a EHCP in the event that he decides he’d like to go to school so that the wheels are greased there.  In the very least, have something in place and maintained so that should he decide to take GCSEs so that reasonable accommodation can be made for his testing, should he need it.  And also to have ready support systems in place should he decide he would like to pursue college and later university.

I’m still considering whether its worthwhile to pursue personal budget.  By the spirit and the letter of the law, my son is entitled to it as his issues are health issues, not education issues.  But all too often, speech therapy, behavior and mental health services, etc., are tied into the school system as though health and education are a confluence, but in my opinion that merely conflagulates the issues.  While it might seem efficient practice from an operational standpoint to pool funding together in one pot and draw from it with the same set of resources that applies to all (i.e.– children in schools), the complexity and unique set of challenges within each and every child touched by ASD essentially makes it impossible for a one-size fits all solution that these sorts of ‘simplified’ systems are geared for.  All parents are left pathfinding.  I suspect many professionals struggle too, especially any that really care.

I’m hoping to make time very soon for what we’ve incorporated into our Home Education provision to help my son with his special needs as a resource to others who are also having to DIY therapies while their children wait for support that will likely come too late.

And I apologize for the somber tone of this post.  I think its warranted though.