FAQ's on ASD (Autistic Spectrum Disorder)

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FAQ’s - Autism

Q- When did you first notice Matilda was different?

Ans- I guess around 3 years old, but even then it was difficult to pin point. She was the sweetest little treasure, so gentle and kind, but didn’t really want to interact massively with the other children. 

Q-Did her nursery at the time notice anything? Help?

Ans- Matilda was exceptionally lucky she went to a lovely nursery in Putney, near where we lived. They pointed out that she separated herself, but in every other respects she was like all the other kids. She was late being potty trained though. But then so are masses of kids I guess. 

Q- When did you first have to take action?

Ans- When she was in year 3. She was at a local primary school, we had moved out of London by then. We knew there must be something as she couldn’t focus at school, she wasn’t understanding what they were asking of her. At home too, her behaviour was becoming increasingly challenging.

We were experiencing regular meltdowns, when I would discipline her for example I would say ‘that’s very bad behaviour’ and she would reply with with ‘your very bad behaviour’ 

I thought she was just being rude, but she was simply mimicking what I was saying, because she didn’t understand the world around her. I would put her in her room, worse still, I even smacked her on occasion, I have never felt more shame about anything else in my entire life. I am totally and utterly against any form smacking children. It shows nothing more than a complete loss of control by an adult who should know better.

Q- I think my child is different what do I do?

Ans- Firstly go to your GP. Go armed though with a list of dates and times and incidents to report. 

  • Interaction with other kids

  • Meltdowns

  • Lack of social understanding? Examples of this.

  • Get the nursery or school on board, this helps massively if they are.

  • Be prepared for a wait and fight.

It took the local authority 2 years to test Matilda for ASD. When I called them, they said, and I quote ‘unless she self harms or attempts suicide, we won’t see her sooner’ she just kept being pushed down lower and lower on the list, because we are a decent family and she wasn’t in any immediate danger.

Q- Did you see private professionals?

Ans- Yes, we have spent thousands on Matilda’s care. I feel fortunate every single day for being able to do this. 

Q- Was ASD the original diagnoses?

Ans- No, she was diagnosed with auditory processing disorder. Meaning her understanding of language is poor, it still is. This is commonly co-morbid with ASD.

Q- Matilda doesn’t come across as very autistic. 

Ans- She does after you’ve spent time with her! Girls and boys present very differently. Girls are desperate to fit, even autistic ones. So they are much harder to diagnose, because all the obvious signs are not there. 

Q- Is ASD the only diagnoses Matilda has?

Ans- No. She has auditory processing disorder, which I often believe is her main issue, her spoken language is excellent, her receptive language is so dire we think that she probably understands about 50% of what is said to her, if not a little less. If you didn’t understand the world around you or what was being asked of you, you would react in a different and socially awkward manner no?

She is also diagnosed with ASD (autistic spectrum disorder) PDA (pathological demand avoidance) part of the ASD spectrum, although she was diagnosed by one person, no one else caring for Matilda agrees with this diagnoses. 

Q- My GP/Paediatrician have said that I should expect a 6 month to a year long wait, we can’t afford private care, what should we do? 

Ans- Ok so assume then that they have been diagnosed with ASD, remember the spectrum is massive. Start treating them differently. My parenting is unrecognisable from how I started out. 

  • Give them extra time to do things.

  • Make your requests minimal and the sentences shorter.

  • Assume they are going to struggle socially, throw them a bone. Give them an exit space/route.

  • Make it all age appropriate. In general terms, ASD kids are a couple of years behind in maturity.

To conclude....

Most importantly remember this. ASD, PDA, Dyslexia, Dyspraxia, auditory processing disorder etc are NOT LABELS FOR YOUR CHILDREN!!!! They are sign posts for everyone else. The problem is not with them you see; its the rest of the world who tells us our kid has to be potty trained by 2, reading by 4, solving Pythagorus theorem by 8…..

If you are at the beginning of your journey thinking, ‘no this is not my child, my child is ‘normal’ my kid is like everyone else’. (which btw is exactly what I did). Guess what, this isn’t about you. Its about an entirely separate human, a human you have been given the privilege of raising. This is way bigger than me and you. 

Your journey will be tough, but you are not alone.