The anxiety of ASD assessment process

[willow25]

Hi everyone, my LO is currently being assessed for ASD, I have had my suspicions since she was 18months, and then during her 2.7 assessment with the health visitor she asked me a few questions that were indicative of ASD, so after some discussion LO was referred for assessment.

We saw the paediatrician in June and after our initial assessment he explained that it would be 12 months till a formal diagnosis at which point he said he would expect LO to be diagnosed with ASD.

We are getting great support, an outreach worker from an autistic care centre, parent to parent are due to get in touch, today we had a triage appointment with SALT who will also be offering help to us and pre school, my health visitor is being great, and the pre school are fantastic.

However, apart from me, immediate family are all a bit sceptical, and I frequently question myself, and constantly try and assess whether LO has ASD or not, she has made huge progress in many areas over the last few months, but I still think she has ASD.

I feel constantly stressed about it, as though im just in a waiting room until I get an answer, and twelve months seems like an eternity at the moment

Im sorry if none of that makes sense, I just felt I had to get it out

 

[mummy2o]

If she does have ASD then it just won't go away and it will always be there, but that being said girls are more able to adjust in the world up until secondary school where puberty and peer pressure all play major parts in it. A girl with ASD will more than likely have 1 friend who they don't mind playing with, she will have more of an imagination then a boy, but she will still do certain key things linked in with autism. For example, she probably won't want to have much social chit chat, but more her area of interest or part of the game she's playing with her friends. I can't think of a child terms but its like you talking to a cashier about the weather and then they go one about X factor and know all the acts, what order they appeared, what score they got etc, more than an normal person would. My son memorised all the Thomas the tank engine trains, what type they were and what part of Sodor they were mainly in. Ask him what he did at school he'll ignore you as it wasn't of interest to him. Another example is of my sister (I come from a big autistic family) and she shakes her hands if she needs simulation. She isn't aware she's doing it. She also does this when excited, she hasn't let it hold her back and she is now doing a degree in Forensic Science.

Your her mum, your with her 24/7 not your family. They don't know what daily life is like and when they do see her, she probably has come on leaps and bounds. Don't doubt yourself. My son couldn't do things one day and the next it will be like he's never not been able to do something. I know waiting is hard, but time soon flies by now days. Just take a breather, drink a cup of tea and try and relax. Although it is hard. I'm constantly comparing DD to other babies and thinking she's not able to do that yet, maybe she has ASD.

 

[marie-louise]

Hiya, I understand where u are coming from! My boy was under assessment from around 2 and we got his diagnosis when he turned 4. The difficult part is the second guessing, maybe it's just a speech delay, he seems fine today, he is doing really well, that is imagination, etc. Also, my side of the family believed that he was autistic, Dh family hinted that I was over protective, should let it lie etc. Anyway, now there is no doubt about it, he started displaying sensory issues at 3.5, can't follow a point now, can't hold a conversation, has obsessions. Now even the hv and doctors ask how I knew so early and it's great that he is where he is in is treatment at this stage. Trust your instincts and hold tight, just remember that diagnosis or not your child will be the same little person they are now

 

[Thurinius]

Hi I've just got the assessment yesterday for my son.
This is all new to me therefore. Do asd children unlearn things? At this point my 3.9 year old has had a vast improvement in his speech, can count and recognise his name and other letters. Is he likely to lose this and the other things he can do?
He does communicate and make eye contact with us and others he's familiar with. But doesn't with strangers, eg the paediatrician he completely ignored

 

[marie-louise]

No they don't unlearn things at that age, in fact my boy has an amazing memory and once he learns things it's there permanently! When they are a little younger they may regress in their speech etc but it is unlikely they would lose it completely over age 3. It is a funny thing, I would have said Matthew's eye contact was good, now I can see that in fact, it is good with familiar adults but terrible with strangers and other children. One thing I've noticed is that the things that bother/ upset him can change from time to time. Did u get any feedback from the assessors?

 

[Thurinius]

It was only the first assessment, we've got to wait for the diagnostic tests that will conclusively say it is autism, though the pediatrician seemed pretty certain. She couldn't tell me whether he would be on the mild side of the spectrum but she did say it was good that his speech had come on so rapidly and that he could recognize his name and knew his numbers.
I don't know really what to expect, whether I have a child who will never leave home or one that might function well in society.

 

[marie-louise]

It's a concern but without knowing your child and just taking what u have said into account, it sounds like he is on the higher functioning side of the spectrum as he is verbal and has shown aptitude for learning. The prognosis seems good to me though I am no expert.

 

[Thurinius]

It's a concern but without knowing your child and just taking what u have said into account, it sounds like he is on the higher functioning side of the spectrum as he is verbal and has shown aptitude for learning. The prognosis seems good to me though I am no expert.

I pray that you are right.

 

[Jencocoa]

I differ a little in some regards from other posters because I do believe (like thousands of others, not just me!) that autism is treatable and recovery is possible. It of course depends on your child and where they fall on the spectrum (much like cancer, some people recover, others do not...depends on type, cause, genetics, etc). I know personally children who lost diagnosis. And the fact that your LO is already making progress is awesome!

OK, all that being said...yes the waiting is torture. If I could go back in time I would try not to let it affect me so much because your child is the EXACT same child pre and post diagnosis, ya know. Family members just don't always get it. They do not live with your child and see what you see, they do not have your mama gut. NONE of my family members believed me (except my mom a bit). They thought I was PARANOID, etc. Now they know...

Hugs!